And what a week it's been.
It's been miserable, but I've learned a valuable lesson.
Last Thursday, I allowed myself a few hours of full-throated no-limit optimism. It was the day I began Trikafta, a drug that could genuinely extend my life by many years. A great tragedy of our lives is not necessarily the hardships we endure. It’s way sadder than that: Life just gets boring. We become jaded by the world, our backs get sore, our lives are spent more worried about bills than excited about what’s next. Life revolves around our calendars, weekdays drag on and weekends fly by until our lives are nothing but an ellipse around our schedules. Life just gets boring when we get consumed. So, I wanted to absorb all of the feelings that came with this massive milestone of a drug and actually allow myself some unmitigated optimism, instead of my usual dose of realism and cynicism.
And what a week it’s been.
Not even 24 hours after beginning Trikafta, a familiar tinge of pain stabbed my upper left abdomen, palpitating along with my heartbeats. Immediately, I was overcome with a sense of dread. I’ve dealt with this pain before half a dozen times now. CF fucks up your bowels, so sometimes, peristalsis—the pushing and pulling of your GI tract that pulls food from beginning to end—halts; Gastroparesis occurs. Also known as delayed gastric emptying, this pain is prominent. It’s a frustrating issue. In my case, it was likely caused by a missed dose of the antibiotic azithromycin. Azithromycin, an antibiotic, is actually not used for infection in CF. It’s used for inflammation, the lesser-known also-dreaded I-word in CF (the other being infection). Azithro may have another, secondary benefit: It may improve gut motility. I use the word “may” here because I don’t think it’s ever primarily prescribed for that reason, though its cousin erythromycin is.
A large burden of having CF is outside of the disease itself: It’s obtaining medications; dealing with pharmacies, getting refill prescriptions and prior authorizations, preparing our medications every week, getting to the pharmacy to pick up the medicine. All of this can amount to hours of work and an unlimited amount of frustrations. Sometimes, by no fault of the patient, we can miss a dose of medication. For most medications, a single missed dose probably isn’t that big of a deal. This isn’t to promote the idea that compliance isn’t important (it obviously is), but it’s also a disservice to pretend that 100% compliance at all times should be the baseline expectation. In my case, this gastroparesis has happened enough times and interrupted my life enough to know that I should always be prepared, but I wasn’t. Getting mad at myself for missing a single dose of azithromycin helps no one. I just need to be more aware next time and to take precautions in case this happens again.
For the last ten days, I’ve been keeping the company that produces MiraLAX afloat. I should’ve let you all know about this issue in advance that you should’ve bought some of their stock. (MiraLAX is expensive, so I’ve been drinking the grossly named “smooth lax” generic but whatever, you get the point.) What drives me most mad about my gastroparesis “flare-ups” (if that’s even what they should be called) is that GI pain is unlike most other types of pain. The pain never totally subsides until the issue is resolved. Instead, you find ways to deal with it; laying down helps, a heating pad is clutch, ibuprofen every eight hours, and sleep is the best respite. When the pain gets worse, it jolts you awake better than a nightmare ever could. I can admit that I shouldn’t find worth in my work, but when gastroparesis knocks me out for days on end, I feel worthless.
Our value as humans should not be linked to our production. Of course, our lives are inherently worth something because we are alive. We mustn’t be productive to have inherent worth. I’ve found that I feel useless when I need to relax and rest and recover. I feel like I’m letting people down; my coworkers when I’m unable to be as productive at my job or have to reschedule meetings, myself when I have hobbies or other things I want to work on but can’t, my friends when I’m unable to help them move when I agreed to help weeks ago. This feeling of worthlessness is more painful than any physical pain; it’s an emotional, spiritual, consequential pain. As physical pain dissipates, emotional pain remains. It’s one thing if I break an ankle and can’t be physically active like I want but can still fulfill my responsibilities; it’s a whole different thing when I’m confined to the couch unsure of when I’ll feel good enough to be myself again.
It’s a paradoxical and humbling experience. I advocate for the disabled community daily. The cold reality of the world is that when we inextricably link value to productivity and “work,” we create an ableist hierarchy that values people more based on their capability, both physical and mental. This hierarchy is broken: Some people are simply capable of more. Our society tends to value people that are willing to go against convention or that put their bodies on the line for their work. Cultivating a body that can “survive” on few hours of sleep is seen as a necessary skill to achieve success in our supposed meritocracy. Doctors, lawyers, entrepreneurs, politicians, “successful” people brag all the time about their lack of sleep, their poor diets, their ability to do so much more on so much less. It’s not seen as a detriment that the very people that are taking care of people or making decisions or appear to be leaders are the ones that can’t take good care of themselves; rather, it’s seen as a necessary sacrifice.
This mindset and framework are damaging to the majority of people. It’s easier for us to believe that if we just work harder, we can achieve anything we want. If we instead acknowledge the limitations of our bodies, we are accused of succumbing to our disease. The sooner we acknowledge the wide range of experience that every subset of every population undergoes, the sooner we can advance forward as a society. When we have leaders of our communities promoting a message of self-destruction to reach self-actualization, we are not, in fact, encouraging people to achieve their dreams in a healthy way. We are instead telling them that to “earn” their dreams, they have to be willing to walk through all the individual circles of Dante’s Inferno, and that the only thing that can stop them is not their limited capabilities, but death.
What are we cultivating with this message? Are we really cultivating good people that want to do good? Or are we telling people—our malleable youth—that some ephemeral dream is worth any and every sacrifice? If we fail to reconcile with what we’re actually promoting when we promote self-help gurus and supposed geniuses who gave up everything for a dream that gave them money but maybe not happiness, then we fail to allow people space to actually pursue what they want to pursue.
As I felt useless during this week, I had to reconcile with some guilt. Alyssa’s life began with gastrointestinal issues and they persisted to the very end. I can remember, during her last year, when she’d be writhing in pain as her bowels stopped doing what they were supposed to. To alleviate the pain, she’d want her doctors to prescribe powerful narcotics, which would slow down her peristalsis even more. I’d lecture her and tell her she needed to grin and bear it and yadda yadda yadda. Looking back, I know I was looking out for her, but more often than not, I was probably a little too harsh. As I was hobbled over in pain, I thought back to her and her life.
We can look back at our lives and find any number of events to justify the way our minds work as we grow older. Alyssa’s health was never really stable. Health issues were more common than not. Her health issues influenced the way she viewed the future. She was never confident in a stable life, she was never able to have the stability to start to think of what she wanted to do with a stable life, and she was never able to find worth in her work.
As much as I believe we shouldn’t find our own inherent value in our work, it’s even harder to imagine an existence where you’re constantly seeking to find value in your own existence, without the opportunity for work. There is no doubting that my sister had a net positive on the world. She was a genuinely good person and wanted to be good to everybody she came into contact with. She inspired literally thousands of people, and her legacy lives on through me and my parents.
And so I’m also grateful that I have the ability to find value in my work. Along with my scientific career focusing on people with rare mutations of CF, I’ve got a few nascent pet projects that I’m really proud of. I’m leading an advocacy initiative with a few ongoing pursuits: making travel more accessible for people with disabilities; worldwide access to care; improving the patient-physician relationship; elevating and amplifying voices of people with rare diseases; and working to combat climate change with a focus on how it’ll first affect people with chronic diseases. This newsletter has already improved my writing and cemented my love for writing and what it can be.
As much as it was difficult for me to take a few days of rest and not focus on whatever work I needed to do, I needed it. It also reminded me of what I’m continuously needing to be reminded of: Life becomes boring whenever we stop focusing on what makes life exciting. Some of the most profound lessons in life are also the simplest. What makes life exciting is not materialistic. It’s the relationships we develop and it’s where we allocate time; Few things make me happier than playing basketball with good friends or writing about life and the universe or taking a walk in the park with Duncan or meeting somebody new and developing a human relationship.
Through my work, I’ve befriended dozens of people with interesting stories. Through my blog and this very newsletter, I’m producing a project showcasing twenty (!!!) different experiences with mental illness. I’m so stoked about it. It’s probably the coolest project I’ve put together since graduating college since it’s amplifying others’ experiences in an effort to normalize a commonly shared experience. It’s cool and I’m proud of it.
I also want to share my thoughts on the first week and change of Trikafta, but unfortunately, I can’t give an honest assessment since I’ve been dealing with severe abdominal pain. I feel like my lungs are clearer, but it’s sort of difficult to know since deep breaths hurt for most of the week (diaphragm pressing down on my abdomen). I will absolutely share something in the near future.
To end, I want to express deep gratitude by roughly outlining my writing career. I think it sort of began when I shared my college admission essay about CF on Facebook and received cool feedback. I started to blog in college then it took a backseat to school. It was after college when I wrote a few pieces and people continued to encourage me. When I officially started trelarosa.com, I had no idea what I wanted to write about. I didn’t know how to write. When my sister died, I paid homage to her by decidedly pursuing writing: I wrote a post every day in May ‘18 called “31 Days of Tré.” The posts were mostly about CF, but also grief, mental health, healthcare, and more. After that, I finally made a Facebook page dedicated to my writing and got a writing column on CF News Today. It was around that time that I added the newsletter block to my website and invited people to subscribe.
Which brings us to today: Over 130 people have subscribed to my writings. That number genuinely brings tears to my eyes. I have struggled with writing and believing in myself so much, so to have people support my writing — either by reading and sharing my pieces, liking or commenting on them, subscribing to this email newsletter, or any other way — is the coolest thing to ever happen to me. It’s only fair, in return for your support, that I’m honest about my writing pursuits.
For the longest time, I didn’t pursue writing and hesitated on calling myself a writer out of fear of being branded a narcissist. But what guides my writing is a love for the human experience, storytelling, relationships, humanity, and empathy. Through my blog, my column on CF News Today, and this newsletter, I have developed and deepened relationships with people from all over. It’s my goal to continue meeting others and amplifying their stories for as long as I live. So thank you for reading my words. Let’s chat some more.
TL