We have to give people their flowers while they’re here

A meditation on life, love, loss, and how we can find peace through tragedy

Apr 16, 2023

March 12th was the fifth anniversary of my sister’s death. My life has changed more than I could have ever imagined over these last five years. She was 29 when she died. I turn 29 on Sunday, April 23rd. Grief, mortality, aging, and CF have been on my mind a lot lately. I hope that you take the time to read this essay on what I’ve learned over the years about grief, and even if you’ve not quite experienced grief, I think this essay will still resonate with you. If so, please feel free to share.

I’m not sure when I first started to fear how I would react to the death of my sister. I know it was before she ever died, long long before. It’s likely I first felt this fear before I realized what I was fearful of, either out of a commitment to my sister that I wouldn’t contemplate her death before it came or out of a fear that life would no longer be worth living once she died. Or maybe it was a fear that I knew I would have no choice but to figure out how to live in the aftermath of her death because I knew it was a virtual certainty that I would grieve her, based simply on statistics that seemed to preordain her future. Cystic fibrosis has a profound effect on the lives of people with the condition and their loved ones, but one of those profound effects is pervasive and secretive: It’s the feeling of knowing that somebody you love is going to die and you likely know how they are going to die. In some ways, it’s a privilege to know our killer while others don’t, but even privileges can be heavy.

When we were kids, my sister and I used to tease our mom for her insistence on complimenting everybody — I mean everybody — on what seemed like the most menial things to us at the time: Their shirts, their nail color, their hair, their demeanor. These would be her friends or family or total strangers in the mall, servers, or drive-through workers. We would tease her because we never knew if she truly liked the things she was complimenting, and even if we weren’t intending to be cruel, we were also often confused because the things she would compliment others on were not things we would’ve assumed she would’ve liked. As I’ve gotten older, I’ve come to adore this trait about my mom. I’ve realized how my mom has embodied genuine compassion, a true commitment to treat others with respect and to do her best to make sure others felt loved and comfortable in her presence.

I share this story about my mom for a very particular reason. Last summer, I was in the office for only the second or third time when I was in the elevator with a colleague I didn’t know. His sweater was awesome, something that I would’ve immediately purchased if I saw it in a store. I complimented him. He lit up when he received this compliment and it was at that moment I realized that I had inherited this trait from my mom where I would try to also make the effort to compliment people. I shared with him that my mom made this effort, to which he replied, “In the south, we call it giving people their flowers while they’re still here.”

I think fondly back to this moment, despite being unable to remember what this man or his sweater looked like. A fear that’s percolated through the neuronal pathways of my mind over the years is that I’ll one day experience heartbreak so earth-shattering that I’ll lose my love and devotion to others. I felt like I was getting close to that earth-shattering situation last summer — just a week and a half after that conversation with the man in the elevator — when Duncan’s health became suddenly dire. I realized how deeply connected I was to Duncan. This experience brought the contours and strangeness of love into clarity for me. I realized, again, how differently our love manifested in our lives. I have experienced a devastating breakup, the loss of my sister, the loss of grandparents, and the near loss of my dog, each upending my life and sense of self in different ways. I too realized how when there are true, real crises in our lives how we straighten up really quickly, finding something deep within us that we may not know is there when things aren’t true crises. It had been four years since I experienced a real crisis when Duncan’s health spiraled and suddenly I found myself split into two versions of myself: The young 22-year-old Tré who was processing my sister’s failed lung transplant and the 28-year-old Tré who knew much more about life. At 22, I felt smart — I was nearing a college degree in chemistry, I had become an adult — and that I could use my intelligence to help my sister. At 28, I remembered this comfortable feeling, but I also remembered a reality that upended my sense of optimism: Sometimes things don’t work out and you find yourself walking out of the hospital at midnight after you just watched your sister die.

As I felt helpless going back and forth to visit Duncan at the emergency veterinary hospital, I did the thing that I felt was the only thing that could give me a handle on the situation: I obsessively researched immune-mediated hemolytic anemia, pouring through academic papers, Reddit posts, everything I could possibly find to shift the odds in his favor, even reaching out to a doctor in Texas who had published papers on this condition. And at every point I researched his condition, I ached with the realization that I once had when Alyssa was dying: There sometimes comes a point where there are no more levers that we can pull to bring forth the outcome we want more than anything in the world. Sometimes, we just end up devastated and there is no alternative. The situation became even stranger when I learned of the medications and approaches used to treat Duncan’s condition. From the first-line therapies to the last, still-experimental approaches that we would hopefully not need to encounter, Duncan’s plan nearly identically aligned with Alyssa’s. Both were on prednisone and cyclosporine and towards the end of her life, Alyssa received intravenous immunoglobulin and photopheresis, which are the same therapies Duncan would’ve received had he not responded to the initial immunosuppressants. From a medical perspective, it’s not that surprising that both conditions — Alyssa’s bronchiolitis obliterans (sometimes known as chronic rejection) and Duncan’s IMHA — would be treated similarly since they’re both related to the host’s immune system, but for me, these parallels terrified me.

In those moments as I waited with bated breath every four hours for the results of Duncan’s red blood cell count, it felt inevitable that my dog was going to die under very similar circumstances as my sister. I experienced a deep terror that for the second time in my life, I would lose somebody that I loved unconditionally, and that I either didn’t do enough to save them or that I couldn’t have ever done enough to save them. During this week which felt like an eternity, I thought a lot about grief and how we respond to the experiences that alter the trajectory of our lives. I thought about how the geometry of grief is radically different under different circumstances. I realized that the helplessness I felt with Duncan’s health was even more disabling than the helplessness I felt with my sister for a couple of reasons: One, because I could speak with my sister, I could ensure she knew how much I loved her, I could call her, at least to the last few days before she died, and she could express how she was feeling. But also, for a second reason: I realized that the weight of the death of a person is distributed upon the shoulders of a community, whereas the death of a dog is more akin to the death of a part of ourselves. When my sister died, I certainly lost a part of myself, but in what I lost, I gained a sense of community and connectedness in the love and grief that many others felt toward my sister. When Duncan’s life was in the balance, I realized that, while there would be lots of people that would be crushed if he were to die (and the love and financial support I received from so many others sustained me during those months) the majority of the grief would fall on me. His absence would, in some ways, be more prominent than my sister’s absence. Being responsible to Duncan shapes my day, it shapes my response to the world, he provides me comfort every single day when I’m frustrated with shit that doesn’t matter or with the shit that does, and it became even clearer to me that the bond between a dog and a human is particularly unique because of how both learn to communicate and understand each other without words. When my mind would become my worst enemy, I reminded myself that this response to these circumstances was something that my sister also intuitively understood. We lost a dog through tragic circumstances in 2016 when my sister’s Yorkie Coco died under anesthesia for routine surgery. She died only a couple of weeks after my Nanna and great-aunt died. December 2016 was an unkind month.

Over time, grief changes a lot. There are certainly different phases, but I’m not sure those phases are independent of one another. I think they’re more cyclical than we realize, some months we experience acceptance and we sometimes experience denial. We figure out how to survive because humans tend to be resilient. We figure out what gives us a sense of control, mostly because we ultimately have very little control in our lives, even though it’s the thing we want the most. Since Alyssa died, I have felt a responsibility to myself, my parents, and Alyssa to carry her life on in some ways. How that actually plays out is not always the same. I have found there are moments where I feel comfortable talking about her, while in other moments, it feels unnatural, rude, or intrusive to other people’s peace.

Last fall, I received one of the great opportunities of my life: I was chosen to join the governing body for the CF Foundation’s clinical trial network (known as the Therapeutic Development Network). This role fits most of my greatest passions: Science, patient advocacy, and clinical research. Though (and maybe partially because) I have benefited so profoundly from Trikafta, I feel a deep devotion to doing what I can to move the needle forward so every person with CF across the world also sees a healthy, stable life and future. As part of this role, I was invited to speak at a conference for the clinical trial network earlier this month.

During this talk, I shared a story that nicely captures a few things about me. As a kid, I used to get so anxious about CF appointments, partially because they weren’t exactly fun, but also because they were so damn long. I would complain about this to my parents until one day my mom made an observation, probably out of a bit of annoyance (which was fair). She noted that even though I complained about the length of the appointments, I also was somewhat responsible for the length of the appointments because I asked every member of the care team a ton of questions, a trait I still carry to this day. I shared this story because I think this trait has served me well and connects young Tré to present Tré. It was also special because the very doctor I used to ask tons of questions to was in the audience and actually works closely with the committee I’m a member of. After I gave this talk, she came up to me and we shared a teary-eyed moment. I thanked her for kindly nurturing the young version of myself because it was her kindness and her willingness to educate me that inspired me to do what I could to understand the world around me, especially when it’s as invisible and challenging as CF. This part of me where I research and ask questions has been fundamental to me figuring out how I fit within the world, as well as how I can try to support those I love, whether that was Alyssa during her challenges with microbial resistance or rejection or Duncan’s health issues.

My first tattoo: A purple rose with the Latin quote “Dum spiro spero,” meaning “While I breathe, I hope”

A few months after my sister got her first double lung transplant, I got my first tattoo. A purple rose with the Latin phrase “Dum spiro spero,” which translates to “While I breathe, I hope.” This tattoo obviously has a deeply personal meaning, but it carries a few other, less obvious meaningful characteristics. One of my best buddies also got this quote tattooed on his back a couple of years prior to me getting my tattoo. Multiple friends have shown their love to me and my sister by getting tattoos that pay homage to CF. And the guy who tattooed me was actually a former colleague who I worked with at a (dying) shoe store in the Florence Mall. This man had a really big impact on my growth and development that I didn’t quite realize at the time. These stories intertwine even deeper. Two years after I got the rose tattoo with the quote about hope, I got two more tattoos: One of the amino acid phenylalanine to pay tribute to the missing amino acid that gave rise to mine and my sister’s CF, and one of a mute symbol to surprise the buddy who got a tattoo for me for his auditory processing disorder. Bret, the tattoo artist who did the rose tattoo, would end up tattooing me again: Two days after my sister died, he let me come into the shop before it opened so he could tattoo my sister’s handwriting. He did this tattoo free of charge.

trelarosa

A post shared by tré larosa 🤌🏼🇮🇹 (@trelarosa)

I tell the stories of my tattoos frequently. For many people I meet, my tattoos are how they learn about my CF or my sister. My sister loved fashion. It was probably her biggest passion. Towards the end of her life, I shifted my way of showing my love to her from constantly trying to figure out and help her be healthier to how she could pursue her love for fashion. I think I had finally realized that her health was going to be a limitation forever and I wanted to do my part to help her find happiness. Perhaps morbidly, I had realized that it was unlikely that she was going to live much longer, so I wanted to try to help her find happiness during her limited time. I suspect her love for fashion is at least partially due to her inability to have control over her body. My tattoos are similar: A way of me retaking control over something that has affected me since before I was ever born.

During this talk, I also shared that I love asking people involved in CF science, research, and medicine how they ended up here. This question is especially interesting when I ask people in their 50s, 60s, or older. These are people who have been committed to me, my sister, and my community since before I was ever born. While they don’t have CF, they are crucial characters in the history of CF. They ask me about my perspective as a patient that I’m happy to share, but their perspective is not insignificant. I can learn a lot by listening to their stories. They know CF, they care about it, and they have dedicated their lives and careers to understanding CF and playing a role in bringing forth a cure. I adore hearing these stories because when people recount their paths, you soon realize how much of life and the history of the world is serendipitous. Some of the people who have ended up spending decades committed to CF ended up in this field through happenstance more than anything. Afterward, multiple people came up to me to tell me their stories of how they ended up at this conference.

The fifth anniversary of Alyssa’s death was a month ago. In just a few days, I’ll turn 29, the age my sister was when she died. When I set out to write this essay, the first non-science writing I’ve done in a while, I was unsure of what I specifically wanted to cover. I have written about grief a few times in the past couple of years, always feeling some obligation to write a guide or something tangible that somebody struggling could read to free them from their grief. But I’ve never wanted to be free from my grief and I’m not sure it’s something anybody wants to be freed from. To be freed from my grief would be to have the memories of my sister rescinded from my mind, a punishment far worse than grief could ever be. Because grief is not pain that we wish to be freed from. Grief is emergent of love.

If I were to try to sum up what I’ve learned about love and grief in the years since my sister died, years that have been filled with more life and experiences than I could have ever hoped for myself, I’d share that love is a regenerating resource that takes resilience and courage to nurture. We have to be willing to accept a lack of control in exchange for love and support and a chance to see the most beautiful parts of life. These parts of life can sometimes only appear through our willingness to embrace the serendipity that can alter the trajectory of our lives. Because while the devastating parts of life certainly alter our life trajectories, so do some of the most simple, serendipitous parts of life. We have to give people their flowers while they’re here because we never know how much time any of us have left.

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