Happy 31st Birthday, Lyss

They say the second year is harder. The first year, every week’s a milestone. You’re constantly bumping into people you haven’t seen in years and parroting the same line over and over again, carefully choosing your words so as to avoid making anybody feel uncomfortable or a bit too intimate. You choose not to say that you’re drowning, that every night you’re going to bed hoping to wake from this nightmare or be released from it altogether, you’re smiling in public, you’re telling strangers you’re “hanging in there” — outwardly projecting a facade of okay-ness, internally sobbing and screaming — so you don’t break the social contract whenever people casually ask how you are.

The second year, the chasm of a gone loved one is your normal. You begin to think that life should be returning to a new baseline, absent-mindedly dismissing the trauma that consumed a year of your life. It’s harder to verbalize the struggles; how do you convey to somebody that you sometimes forget that your sister is gone? dead? (the word “dead” just feels so insensitive, but “gone” feels so…light) even though you’re reminded of it daily by her handwriting etched into your forearm? People come into your life that never knew you when you felt whole or that only saw the aftermath of how your loved one’s death affected you. Their only semblance of who that person was is through your anguish and the way you carry on that person’s legacy. Your loved one’s legacy is no longer their own; it becomes a part of your story and the way you choose to tell their life story.

Life becomes subsumed by the same ol’ bullshit that it was before your life was ripped in two halves. You start to become stressed with work stuff that doesn’t matter or being late to a meeting that also doesn’t matter or irritated that somebody made a rude comment on Facebook. Life does reach a new baseline. I guess life is always reaching a new baseline, after roadblocks and before. 

When my sister was alive, I didn’t live in the moment. Of course I told myself I did — I started exploring mindfulness during a particularly rough few months after her first transplant in 2016 — and I wrote about it, too. But where was that mindfulness when I was spending time with my sister? It went out the door. I was endlessly worried about when her next bout with rejection would begin, badgering her about her treatments and “understanding her treatment plan.” Instead of being her brother, I sought out the role of expert in her care. But I didn’t belong in this role. Our relationship shouldn’t have been predicated on her health; it should have been predicated on the simple truth that she was my sister first and foremost, before she was a patient, before her CF, before any future trouble. I told myself it was out of love that I worried about her so much and was so tough on her. It was, to some degree. But really, it was out of fear and powerlessness. No matter what, I couldn’t accept that Lyss’s body wasn’t like mine. It never was, from birth until death. She was born fatally ill; I was a healthy baby. She struggled with weight; I have, too, but in the opposite direction, clearly, since I still feel upset thinking about the girl who called me fat in second grade. I respond well to antibiotics; she just didn’t. I wanted the opposite to be true, I wanted her to be able to have my life, to go to college, to be “bigger” than her CF, to work full-time, to hear people say “You don’t look sick!” instead of “You’re so thin!” 

And so I blamed myself. Survivor’s guilt is no joke. In the aftermath of my sister’s transplants, hospital stays, and death, dozens of times I have found myself overcome with a nauseating feeling that I didn’t deserve the life I have and neither did she. I deserved to struggle more, she deserved at least one span of six months of peace. What does “deserve” mean, anyway? Was I a saint in my past life, my sister a sinner? It would be easier that way. At least it’d give some explanation for our antithetical experiences in life. 

She should be here today celebrating her 31st birthday. I shouldn’t have to be thankful that she’s not struggling to breathe or worrying that she’s going to reject her lungs. I should be texting her and giving her shit and telling her to have a good day at work. She should be planning a future for her kids and family and talking about where she’s thinking about moving or what business she’s going to start. In another timeline, maybe she’s doing these very things. 

I’ve been focusing on my accomplishments lately. I want there to be a world where it’s more likely for us to die by incident than by CF or rejection. Ideally, I want there to be a world where CF is no more and lung transplants are a by-product of a time long gone. I’ve invested myself in my writing, in public speaking, in advocacy, and in my work, convinced that — maybe someday, eventually — I’ll be able to get to the point where my accomplishments fill the aching hole in my heart. 

This is the same bullshit I used to tell myself when my sister was alive. I prided myself on being realistic about Alyssa’s likely prognosis. If I were truly realistic, I would’ve believed that prognosis — a few years after each transplant — and learned to accept that and just genuinely appreciate my time with her. I pushed it off, time and time again, to the next day. 

If our lives are dependent on our accomplishments, we will never stop. We will never feel accomplished and we will never appreciate what we have done. I believed that if my sister were healthy, or that if at the very least she got a stint of a few healthy months, I would’ve been able to take a step back, stop being so obsessive about her health, and appreciate our lives together. I always looked toward the future instead of sitting there in the moment. 

When we’re stuck in the endless cycle of life, it can feel like life stops becoming a series of interconnected moments flowing into the next and rather becomes segmented bullet points, punctuated by different events. It’s in this paradigm that we get caught up and forget what life is about. When I find myself moving too quickly and getting too anxious, I try to slow down, glance at my forearm, read my sister’s message, and reflect on how I wish I had spent my time with her. I wish I had learned to appreciate the journey, instead of appreciating the highs and despising the lows. 

In the time since she died, I have heard from literally hundreds of people about how my sister influenced their lives. I feel sorry for my sister that she didn’t know that when she was here. Maybe if she had, she would’ve been at peace. I can only hope she’s at peace now.

Happy 31st birthday, Lyss. We miss you more every single day.

TL

DC, Bethesda, and Eighteen Months without my sister

A few nights ago, I googled “Saddest movies on Netflix right now.” I realized I hadn’t sat with my emotions in a while and I wanted to get into a state of mind where I could reflect on the last eighteen months of my life. I found the movie 50/50 starring Seth Rogen, Joseph Gordon-Levitt, and Anna Kendrick. It’s about a guy that goes to a doctor due to back pain only to discover that he’s got a large, malignant tumor deep in his spine. Options are limited to one: chemotherapy to reduce the size of it followed by a risky surgery to resect the tumor. The prognosis isn’t great. 

As I watched this man’s life devolve from a life full of bullshitting with his best friend and dealing with typical relationship and work problems into a life full of doctor, chemo, and therapy appointments, aches and pains, and a general sense of uncertainty, I couldn’t help but feel some bitterness. Why is it that we are able to live our lives without much meaning, treating every day as expendable, and constantly pushing off the important things we want to do until the ground is finally ripped from beneath of us? 

I look back at the last few years of my sister’s life with a sense of frustration. Lung transplants are not guarantees of life; in fact, they are just a bandaid on a hemorrhaging bleed. Sure, most people that are even at the point of evaluation for lung transplant do not have a great bill of health, but lung transplants are rudimentary without ideal prognoses, all things considered. I knew my sister did not have the brightest outcome after the lung transplant. And yet, during that time, I could never live in the moment. I worried about my sister constantly—it came from a good place in my heart—but didn’t appreciate the time we spend together. I resented that my sister was sick. I hated that she couldn’t live a normal life and that we couldn’t just look toward the future with a sense of comfort or at least stability. 

It isn’t great that I’ve spent so much time thinking about that period of my life (I’ve talked about this a lot with my therapist) but I think it raises a valuable point: If I can reflect back on that time and recognize that I wasn’t appreciating life, I can try to be better in the future. 

Fast forward to September 2019, the night before my day on Capitol Hill. I lay awake contemplating life, filled with conflicting emotions. I was in a mostly empty—filled only with my necessary belongings strewn across the room—hotel room in a city I’d never been before. A feeling of dread bubbled over me, my thoughts peppered with the same self-defeating voice that’s been present for years; that same feeling I used to feel whenever my sister was sick. I was anxious and overwhelmed as I tried to fall asleep. When I awoke, I was already overthinking what I was going to say to the staffers in my representative’s offices, overwrought with self-doubt and paranoid concerns. 

The day went on: I told my story, advocated for affordable, accessible health care and robust funding for the NIH and FDA, and learned about how policy works on Capitol Hill. It was a day of speaking truth to power and hopefully making a concrete difference in a new way.

That evening, I decided to re-tool most of my talk for the CF Foundation. My speech was in front of the entirety of the CF Foundation—all internal members at headquarters and also live-streamed to all of the local chapters nationwide. It amounted to the largest speech I’ve given yet, to an audience of six to seven hundred people, one hundred and fifty to two hundred of which were in person. So what did I—a 25-year-old who doesn’t struggle to do treatments every day but can’t seem to find a routine for cleaning his house or doing his laundry—want to convey to this audience without sounding self-indulgent?

It didn’t feel right to get up there and try to give a talk representing the experience of everybody with CF; there are more than thirty thousand of us in the US after all. Instead, I wanted to convey the most important lesson I’ve learned in this floating existence since my sister died. 

That lesson being how important it is that we all have to learn to tell our own story. Our lives aren’t fully realized until we fully realize what we want out of life. One of the best things 50/50 did was when Joseph Gordon-Levitt’s character is first diagnosed with cancer: He dissociates, unable to process anything after the word “cancer.” The world blurs around him, sounds are muffled, and he’s deep within his own head; for probably the first time in his life, everything—life itself—could soon be gone. It isn’t just that life may be altered, but that petty argument he had with his girlfriend or small confrontation with his boss earlier means less than nothing since he realizes how much deeper life is than a single instance, and that it could soon be over for him. Life flashes in front of him. 

This sudden shift in the spotlight of life and what we value most usually only happens when our worlds shatter. It can be from terrifying news or from losing somebody. But ultimately, this is when life—as blurred as it appears to be—is indeed crystal clear. Our brains are hardwired to focus in on what means the most to us when we learn the fragility of life. Love is what fuels us.

So what has fueled me to keep going in the aftermath of a life lived with my sister’s presence? I’ve found there are a few joys that keep me moving toward the future. There are small, fulfilling joys: Taking Duncan to the park and sitting in nature with my best friend shows me the complex beauty of sentient life, nature, and the universe. And there are deeper joys: Writing meaningful pieces, strategizing for the future, and giving speeches to audiences provides me with a sense that my life is bigger than my internal mind. These joys fascinate me and fulfill me in different ways, but they both provide me with a sense of hope and a purpose bigger than myself.

When my sister died, my world shattered. I kept asking myself What is all of this for? What is the point of going to the gym, working, writing, living if we’re all dust eventually? The past was transient. Alyssa only remained in our life in an abstract form: Social media, in pictures, in texts, in ways that flattened her life, and in ways that confined her to the past. It was at that point that I was finally struck by an important lesson; If we’re all going to be gone eventually, why live according to anybody but myself? (It should be said that this rationale can be used by people to harm others, but really what I’m saying here is that we have to do what’s best for us, with the obvious condition that we aren’t hurting others in the way.)

I tried to stop obsessing over what others thought whenever I wrote a blog or posted something on social media. I realized how complicated life was in some ways and how simple it was in others. I realized we think other people are thinking about us far more than they actually are. And I realized that life is fucking short. You won’t always get another chance to say I love you, or another weekend to hike, or another opportunity to pursue your dream job.

I can’t say that my writing career necessarily took off but that’s when it began to take shape.

I wrote about my grief and mental health and it seemed to resonate with others. It felt good for me to broach a topic that I feel like needs to be broached more often and to hopefully de-stigmatize it. I began to tell my sister’s story, and then it turned it to being more open about telling my story.

And people wanted to listen. I am grateful that people wanted to listen. That support propped me up and it gave me the confidence to pursue the most thrilling joys of life. It’s led me to getting a column, to giving a keynote speech, and then to spending eight hours discussing strategic plans with ten different departments at the CF Foundation. It led me to believe my voice mattered. Not that it mattered more or less than anybody else but that it mattered at all. Our voices are not at the expense of others (or they shouldn’t be; if you’re using your voice to suppress others, you’re using it wrongly).

My day at the CF Foundation consisted of meetings with many different people. I learned about what is happening there right now, what the future looks like, and I provided insight on what I think they could do better in these different departments. For years, I’ve worked in CF—in science, in local advocacy, and on other projects in the CF world at Children’s and with the CFF—so Friday was the culmination of literally years of work. I felt like I was in my natural element all day.

It was also surreal to have my parents, my cousin Maria, and my Aunt Gina with me there for my speech. It was obviously great to have their support, but it was surreal for another reason. During the question and answer portion of my speech, my parents were asked a question, which then led to my cousin and Aunt chiming in as well. My story is not just mine, but also my family’s, my friends’, my colleagues’, and even my readers’. My cousin Maria told me that her friend said that everything our family does “is a production.” Alyssa would have agreed.

If I had to express life and the last eighteen months in one sentence, it would be this:

Life is made interesting and fulfilling by our relationships with others and the world, and one of the best things we can do in life is learn to tell our stories and learn to listen to other’s stories.

When I look back at the few months after Alyssa died, my world was about so much more than the daily bullshit we all struggle with. I took things less seriously, I worried about others’ opinions less and less. And eighteen months later, I feel like I’ve forgotten that lesson; that life is so much bigger than that. We get one chance at this. We must capitalize on it.

Thanks—to the CF Foundation and to those of you that read my work on CF News Today and on here—for giving me the chance to tell mine and my sister’s story. I’m eternally grateful.

TL

on worrying

Note: I am not a mental health professional. I am just somebody who has been agonized by terrible anxiety and worrying and this piece is based on my experiences.

I remember being called a “worrywart” when I was just a kid. I hated tornadoes and always worried about getting trapped in them and (as terrible as this is) dying in one. I researched them and tried to understand the weather formations and warning signs before they would happen, believing that that would provide me a semblance of control over the ultimate outcome. As I grew older, I used this same strategy with CF. I still use this strategy with CF. Humans and their elevated consciousness like the feeling of playing God and understanding what, how, and why things are the way they are. But does this really reduce worrying or provide that much of a benefit?

Let’s consider something. Say there is scenario p. p is a bad scenario – for the sake of continuing with the example, let’s say p is a tornado happening (we don’t have to delve into the spectrum of possibilities like a tornado destroying your house or putting you in danger, let’s just say it is happening in your region and we don’t know what is going to happen). There are two possibilities worth considering, p and not p; either a tornado is going to happen or it isn’t.

For young Tré, it felt that the future was already decided, so my anxiety convinced me  tornado was going to happen, scenario p, so I would worry endlessly. In the time leading up to p or not p happening, I chose to worry (worrying isn’t so much a choice as it is a habit, but we’ll get to that). Here, we’ll label the act of worrying as w. So in the lead up, there were two choices, w and not w.

Ultimately, there were four possibilities:

1. w and p; worrying about a tornado and a tornado actually happening

2. nw and p; not worrying about a tornado and a tornado actually happening

3. w and np; worrying about a tornado and a tornado not happening

4. nw and np; not worrying about a tornado and a tornado not happening

To be clear: worrying about a tornado absolutely, unequivocally did not determine if a tornado happened or not. (Also of note: Worrying about a tornado is different than being aware that there is a risk of a tornado happening. Being aware of one means preparing for it, then waiting; Worrying means preparing, then obsessively thinking and concerning one’s self with it happening.) As long as one is prepared when there is a risk, worrying will change nothing.

So we can then rank those possibilities from the time before until said event passed, by order of the most beneficial or sensical. This is subjective, but I think most people would agree with my assessment. Bear with me. My rankings are as followed:

1. nw and np; not worrying about a tornado and a tornado not happening

2. nw and p; not worrying about a tornado and a tornado actually happening

3. w and p; worrying about a tornado and a tornado actually happening

4. w and np; worrying about a tornado and a tornado not happening

In my assessment, I’ve ranked the nw (not worrying) options as the top two, no matter if a tornado happens or not (obviously assume that no severe damage happens, since in most tornado warnings in Cincinnati, you don’t lose your house or get injured; I’ve spent countless hours worried about tornadoes and have never had any concrete damage happen to my life from them, even after living in Indiana). 

The controversial part of the rankings would probably be #3 and #4. I’ve ranked worrying and a tornado happening as the worst of the scenarios (again assuming there was no damage from said tornado). The reason I consider that to be the worst is because, not only did a tornado happen that worrying did absolutely nothing to prevent, we wasted precious time preoccupied with a fear that was out of our control. This is where worrying becomes something within our control. In my life, I consider time to be precious, so the time spent worrying is time I value as less than time I spent not worried, which is why time spent worried about an outcome that never ended up happening is precious time dearly wasted. For the sake of this strategy to help with worrying, I do not believe it is necessary to evaluate the countless varying possible scenarios where a tornado does happen and there’s little damage all the way up to a fatality due to a tornado. Allowing our mind to exercise its creativity by imagining all the possible scenarios only indulges our worst impulses.

Before I go further in my assessment, I want to be clear: I have been diagnosed with generalized anxiety disorder, so I’m fully aware of how anxiety is not simple worrying. I’ve been treated for it and Xanax has been a huge ally of mine in moments of deep anxiety. It’s still our responsibility to learn how to navigate our anxiety, how to interrupt those negative thinking patterns and rabbit holes, and how to prevent ourselves from indulging our irrational tendencies. I will say that chronic worrying as a kid (I wasn’t officially diagnosed until last year) may have blossomed to anxiety disorder as an adult.

This thought experiment hinges on a couple of things. First, it hinges on the possible scenario that we’re likely anxious about being out of our control. This includes upcoming appointments, a plane flight, some unforeseen future event that our anxious mind concocts, or really anything else. Secondly, this assumes we’ve done everything we can to absolve ourself of responsibility or control over the future event. This thought experiment does not endorse simply doing nothing for things we’re anxious about. If you have a strange spot on your face that could be malignant, worrying alone will change nothing. The correct thing to do is to schedule an appointment to get it checked out, make sure you’re keeping it covered in the mean time, going to said appointment, then chatting with your doctor and waiting for the results. Once an appointment is scheduled or the results have been sent out, the future scenario is out of your control, so worried time is time wasted or spent poorly. The cool thing about this strategy is that everything is out of your control once you’ve taken the necessary steps to alleviate your responsibility, so worrying, which is a habit, begins to fade away with practice.

I fully recognize this is not simple. Like I mentioned above, anxiety and worrying are habits that we find ourselves entrenched in. Some people have genetic predispositions to anxiety or were raised in extraordinarily tense environments which have had long-lasting effects. To get better about our anxious tendencies, it is on ourselves, once we’ve gotten the appropriate medical treatment, to develop the skillsets needed to make our lives better. This is primarily for ourselves, nobody else (though others in our circles that are affected or concerned about our anxiety will benefit).

My idea on this is based on experience. More often than not, I have allowed myself to indulge myself in irrational tendencies. I’ve heard one too many times the dangerous mantra “Expect the best, prepare for the worst” (Fine, I will recognize preparation is good; It is good to be prepared for bad scenarios, but balancing preparation with expectations is a delicate skill that this strategy will help with). I’ve allowed myself to believe that somehow preparing for the worst case scenario will alleviate myself of impending disappointment, but inevitably, if that bad thing happens, I’m still sad and disappointed, both at the outcome and at the fact that I wasted the time already sad about the end outcome when I didn’t have to be. (Ignorance is bliss!) Worrying didn’t bring that outcome, so why not have spent it happily?!

Alternatively, if that bad outcome never comes to fruition but I spent days to weeks worried that it would, I’m finally thrilled and relieved when it doesn’t. Then I reflect and realize that time spent worrying was wasted since the scenario never happened and worrying didn’t, in fact, prevent it!

Look, I understand worrying and anxiety are both debilitating and make life hard on almost all of us. I’ve been there and still struggle with it every single day of my life. Journaling has helped a lot, especially when I write about my worries and why they are or aren’t likely to come true. I don’t think this is simple and easily prevented, though I wish it were. This strategy has recently provided me a lot of respite from my daily battles with anxiety and stress. It, like most other types of cognitive behavioral therapy, is difficult and requires lots of long-term effort. I encourage you to give a try, and be easy on yourself when you start recognizing those destructive patterns. Just understanding they exist is one of the most important first steps.

To sum all of this up: When evaluating a possible bad scenario, consider first the steps you can take to prevent or prepare (within reason!) for that scenario. Once those steps have been taken and there is nothing else you can do, try to allow yourself to not worry, telling yourself that worrying itself will do nothing, aside from rob – from yourself – the current time you have to exist relatively peacefully. Then, whatever outcome happens, use that as an example to teach yourself that worrying did not prevent nor cause the outcome to happen, so the time was better spent enjoying the moment or forgetting your worries and focusing on things within your control. 

Give it a try. I’d encourage you to write it all down. Writing and journaling are so valuable. Anxiety and worrying suck, but we’re all in this together.

TL

one year

I remember sitting with my cousin Maria in her living room during her phase where she was obsessed with the musical Rent. It’s one of those weird memories that sit dormant for some time before being summoned upon a trigger. In my case, it was when I was watching The Office episode where Michael is finally leaving and the cast sings to him a rendition of “Seasons of Love,” edited to make it fit his life (he loves Rent). I remember being a typical boy, hesitant to admit I enjoyed a song from a musical, but there was something special about the melody paired with that phrase “Five hundred twenty-five thousand six hundred minutes” and its significance. The uplifting yet nostalgic chord progression coupled with the seemingly innocuous and cheesy question How do you measure a year?

There’s something strange and ephemeral about how that song, which seemed to mean nothing when I was a kid other than it being a catchy tune, has become something that wrenches my heart. (I also adore The Office so their rendition of it also rips my heart up too.) 

Looking back, I don’t think I give myself enough credit for the curious kid I was. Maybe I was already conditioned to think about the meaning of my life more than I realize. I was already aware of the life expectancy for people with CF, so it’s possible that the jarring concepts of finality and fragility of life were already deeply embedded in my young mind. It is possible that I was already questioning about how best to spend my time and enjoy my life; already wanting to maximize the time I had on earth. 

The funny thing about The Office version of “Seasons of Love” is that it is more symbolic than what probably comes across at the surface. The Office is a deeply human show – the characters are portrayed as flawed and deep foils of ourselves. In fact, they are us. In that scene, the cast sings about how they’ve forgiven Micheal for the many inconsiderate and stupid shit he did over the years because they realize he was just doing what he thought was right. They reminisce about his quirks and the characteristics they loved about him, as well as the lovable downfalls due to his overly excited personality. 

In the year since my sister died, we’ve not spent a single night in the hospital. We’ve not spent a single moment worrying about her blood results, her health, or how she would be feeling in the near future. By all accounts, my parents and I are healthier than we’ve probably ever been. In these ways, our lives have obtained a bizarre sense of stability we’ve never known before.

My life has changed dramatically in many ways. I am an actual paid writer. I have been on committees and become exponentially more involved in the CF community. I have become a voice that people listen to and I take that very seriously (I don’t want to sound cocky admitting this, but acknowledging it means I’m careful about what I say). I have worn my heart on my sleeve in order to show what grief can look like for people, especially since we live in a culture that doesn’t exactly promote public grieving or mental health conversations. It also should be said that men aren’t encouraged to be particularly open about their emotions, which influences me to be honest and authentic about my feelings. 

I am often told that my emotions are valid and acceptable and that time isn’t supposed to heal Grand Canyon-esque wounds quickly. But I am expected to move forward every single day because, no matter what anyone says, I don’t have a choice. I have to work. I have to keep going – For myself, for my parents, for my dog, for my friends, and ultimately, for my sister. I can choose to spend the entire day in bed, but I know that my job can only accept that for so long. 

I don’t want to quit life. My depression is mostly kept in check, though it, combined with anxiety, are still daily battles. I am constantly wondering if I’m doing enough, because maybe, just maybe, a bit more advocacy efforts or anything else will cure the ache in my heart. I wonder if I will ever be satisfied, if there is anything in the universe that will make me happy. Somehow it seems like forever and yesterday all the same that I watched my sister die, eulogized her, and then proceeded to mourn her amongst hundreds of friends. In the days after, I was blanketed in support from people close to me and people that I didn’t know because my sister touched their lives. I felt that her life ultimately changed the world for probably thousands of people. I felt okay, that I would always remember the difference she made and the love I felt in those days.

But people move on. Grief affects the departed’s family the most, but as the microscope zooms outward, people are affected less and less, which is how it should be. I feel sadness every single day when I think about my sister. I feel guilt when, in moments directly after a good experience, I remember that my sister is gone and I will never see her again. I feel intense rage when I think of the suffering she went through every single fucking day for so long. I want to believe her spirit is real, present all the time. I want to be optimistic because I know my parents read every word I ever write. I fear that my frustrations, which I don’t openly vent about to my parents, will worry them endlessly. After all, I’m supposed to be their healthy child. 

I’ve started to forget her voice. I’ve started to forget the quirks about her that made me laugh and also the quirks that annoyed me as sibling’s quirks often do. I realize this ability to forget is actually what makes it possible for humans to handle tremendous emotional pain. If we were unable to forget anything then we would never be able to grow, move forward, or survive. I don’t want to forget her though. It isn’t fair to her, though it may be necessary for me. 

As long as I can remember, I knew I would live years of my life without my sister. Humans are weird creatures, though. The human mind is capable of realizing something, but the human heart or spirit or soul is capable of pushing that reality so far into the future that our minds are convinced otherwise. One conversation I’m absolutely terrified to ever have with my parents is if they’ve pictured their lives without me. The realist that I am assumes they have. When I was born, it would’ve been hard to envision a timeline where I’d outlive them. As much as I’d never want my parents to have to grieve me, that timeline may exist, and a part of me fears I’m confined to a fate of grieving all my loved ones that I care most about. 

Back in late November, after Thanksgiving, we were driving home one night and my mom was sad about Alyssa. Through tears, she said to me, “I know you will outlive me and dad.” In that moment, my heart, shattered already, managed to shatter twice over. The most important woman in my life, having gone through a parent’s worst nightmare, has to spend time praying and hoping she will never have to go through that experience ever again. 

I’ve spent more time than I should wondering about my legacy. The thought that one day we’re here then one day we’re nothing more than the wind frightens me. There are days where I can’t fathom that my sister is just not here anymore. I don’t want my sister to be forgotten and I know she will not be for a very long time. She was a special person. And yet, as hard as life is, there are moments when I realize there is nothing better than existing.

No matter what happens, it is one of the fundamentals laws of the universe that time will march forward. It doesn’t feel like it’s possible that it has really been a year without Alyssa. As I reflect on the last year, so much has happened. A lot of really positive things have happened in my life, likely due to my sister’s legacy of being open and honest about what we are going through in our lives. Every single day for the last year, I have awoken to a terrifying nightmare world without my sister. As each day goes on, I have to remember how hard Alyssa’s life was for so long, which does somewhat help to mitigate the pain I feel. It is possible for us to feel happiness in knowing we’ve used our pain for good, while also recognizing how much we miss our dearly departed. Grief is a personal experience that really does not make sense.

I admit that every single day, I wonder if I will ever be able to do enough to feel truly unburdened by my grief. I worry that nothing I ever achieve, any peace I ever feel will be able to alleviate mine and my parent’s sorrows. I’m not sure if I want to be totally alleviated of my grief. Not feeling sorrow would imply I’ve moved on from my sister, something I never want to do. I guess all I can really do is make sure I’m giving myself peace, ensuring I’m loving the people that mean so much to me, and living the life I want to live in Alyssa’s honor.

I will rest a little easier knowing Alyssa would be proud of me and my parents. I am so grateful for the family, friends, and support system I have. Thank you for being there for me and giving me the confidence to write through my life. All the love in the world to all of you.

TL

2018

In about a week, it’ll be a full two years since I started my blog. When I started my blog, I had ambitious goals. I had hopes that I would write weekly pieces, accompanied with videos, photos, and tons of other creative endeavors. I didn’t realize how much work would go into it and how discouraged I would be when my pieces weren’t shared or widely read. I will note that that isn’t why I set out to start blogging and writing consistently, but it felt weird, almost embarrassing, to share pieces that people weren’t reading. Due to this, I ended up posting twenty-one total pieces in 2017 on my blog, half of which were book reviews that I’ve since archived for the time being, and a total significantly lower than my original hopes. The other pieces were written off-the-cuff when I had thoughts on my mind or just felt a spurt of creativity, which is how I viewed my writing “style” at the time. All of this is to say that my pieces weren’t bad, so to speak, but I wasn’t writing consistently or taking it very seriously. The biggest success regarding my writing career that occurred in 2017 was my first piece being posted on the CFF Community Blog in November – an important step in my blossoming writing career, don’t get me wrong. At the end of last year, I decided to take writing more seriously going into this year.

This year, I started the year off by writing a review about 2017. In that post, I reflected on the year before and how I planned to approach 2018. Here’s how I concluded that piece:

We all suffer. To cope with my suffering, I like to create art, something I'm proud of. Whether that's through writing and the beauty of written words, or through speaking and communicating and finding the right words to describe my worldview, or through exercise and the joy of improving my fitness and directly combating the effects of CF, this is my art.

The world can feel like a hellscape or a paradise, sometimes all at once. We're all in this together and the only way I'll ever be happy with myself is if I communicate the lessons I've learned through my life and experience. Writing helps to elicit deep emotions and consolidate the lessons I've learned, all while having the possible benefit of sparking discussion and reaching others.

In 2018, I hope to read voraciously, write constantly, learn endlessly, and create continuously. I have so many ideas that I'm excited to get started on and the New Year provides a great starting point. 

In the upcoming year, I hope what I can do best is to embrace life as it comes. I'm going to allow myself to enjoy my experiences. I intend on being a better person than I've ever been by being more understanding, more loving, more open-minded.

I hope I can reach people through my writing.

Even though it was only a year ago and before my writing career was even anything more than a hobby, that conclusions is pretty profound. Two days after posting that piece, I shared a piece titled “Coming to grips with my mortality” a day after I finished reading a memoir – Dying: A Memoir – that would be oddly prescient of the forthcoming couple of months. In that piece, I wrote:

Writing allows me a semblance of control over my reality. Writing is how I cope with my suffering.

A few weeks after writing those two pieces, we would be informed of Alyssa’s situation – her body was rejecting her lungs again and her time was limited. That quote – Writing is how I cope with my suffering – would end up being the defining aspect of my 2018 – the year I finally became a writer.

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In April, I wrote a piece for the Kentucky Organ Donor Associates (KODA) blog titled “My Sister Alyssa” where I reflected on Lyss and her advocacy efforts for organ donation. This piece was significant for a couple of reasons. Obviously, I was so excited to write about Alyssa for a cause that is important to my entire family, and using it to push along a message encouraging people to become organ donors while also honoring Lyss was humbling. But it was significant for another reason: the description KODA used at the end of the piece to describe me said “Tré is an up-and-coming writer in the Cincinnati and Lexington areas.” That was the first time somebody else had ever identified me as a writer. This may seem minor, but to me, it was one of the most encouraging signs of my ability to put complex feelings into words, or as I now think of it, my skills as a writer. 

As much as I want to encourage how important it is to believe in one’s self and not need the validation of others, I look back at this moment as an important moment of self-discovery. It occurred to me that others, or at least one person, viewed me as a writer. After seeing that – Tré LaRosa is a writer – for the first time, it was a huge paradigm shift for me. Paradoxically, it was that moment that pushed me to stop worrying about what other people thought. I’ve not written too much about this, but one of the biggest roadblocks to calling myself a writer and fully embracing writing was the fact that I’m not classically trained. 

Lots of writers study literature or journalism or another similar degree in college. I studied chemistry, where there is a lot of writing, just not the writing that I do now. In some ways, it seems my writing style is the antithesis of the type of writing I did in college. The majority of science writing is technical and jargonistic; to most, it’s boring and unappealing. My writing style now is personal narrative pieces or commentary about science or social issues in a cool way. I wasn’t trained to write in this voice, but I think I’ve blended the skills I learned in college – like breaking down complicated science topics into simpler ideas –with the skills I’ve developed on my own. 

I felt that I was imposing on the profession when I called myself a writer. I thought to myself, What would Stephen King say if I told him I was a writer? What about classic writers like Orwell or Kerouac? I worried that I’d be laughed at or judged against professional writers, or that I was hijacking their credentials. In my other career as a scientist, I felt comfortable because I had a chemistry degree. I even rationalized that writing was different than other artistic endeavors like music or painting since writing means you have to believe people care about your words, whereas music or painting are different sensory experiences. All of this is twisted logic, I know now. it just goes to show how powerful our minds can be in hindering our own goals and ambitions. 

When somebody else identified me as a writer, well then, who cares anymore what other people think? Again, very twisted logic that led to an important lesson. Nearly everybody else is preoccupied with their own lives, so it’s up to us to do what we need to do to achieve what we want to achieve and disregard how other people perceive that (unless of course you want to be a Walter White-esque drug dealer and your friends and family are not very fond of that; in that case, you should definitely not do that type of thing). I began to view myself as a writer; I started telling others I was a writer, because I am a writer and it’s not up to anybody else to decide that. I don’t want this to sound to sound arrogant because it really isn’t; there is a vast difference between arrogance and self-assurance.

This lesson was valuable for me to learn and it’s a lesson that probably anybody that wants to pursue any sort of art has to learn at some point. But it has helped me develop some life wisdom that I can pass along to others that hope to pursue something. If there are any aspiring artists reading this: know that I am here if you want to reach out, but also know that you must persevere in your passion and it will begin to reward you, even when it doesn’t feel like it ever will.

In the eight months since I had that wonderful realization, I have spent countless hours writing. The single most concrete example of how my writing career has prospered this year is that I am currently writing my first ever paid column, titled Mutations & Conversations about CF science and other social issues related to life with CF, on the site CF News Today. I’ve been writing that column for about 3 and a half months now and it’s been a pleasure working with plenty of editors, other columnists, and colleagues. They've given me essentially free rein to write about whatever I want to write about; this allows me to flourish as a writer and as a person and I’m so grateful for that opportunity.

In 2018, I also increased my presence in the CF community more than I expected I would have. With my writing for CF News Today and my part in the plenary at the North American CF Conference, I was able to showcase my voice and ratchet up my advocacy efforts. I won’t digress too much into that, but my current job has given me a breadth of knowledge regarding CF science, medicine, and the overlap of the two. My colleagues have been superb coworkers, mentors, and friends. I am eternally grateful for that as well.

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If you’re reading this, you most likely know how hard this year has been for me and my parents. This year, in March, my sister Alyssa died after rejecting her second pair of transplanted lungs. Writing has provided me the outlet needed to grieve my sister, approach my depression and anxiety head on, and hopefully leave a mark on the world, too. Since death is something young people with CF have to spend time thinking about, one of my goals is to normalize death as a topic; how humans view death, how we grieve others, how we should discuss it. But discussing death has another side of the coin: it encourages us to talk about how we should live. It should help us to see how others live their lives, which then helps to develop empathy as a skill and we become more compassionate people in the process. Talking about life and death should help us clarify how we want to live our lives and how we go about our daily lives. Thinking about existential issues allows us to see life from a different lens, which can hopefully reduce our dependence on the things that don’t mean much. In the end, I believe talking about these heavy topics is so important simply because every other topic is under their umbrella.

I’ve always felt older than my age, but I feel significantly older than 24 in most ways. This year, I watched my sister die, wrote her obituary, and eulogized her. I’ve lost grandparents and dogs, but that’s the way we are expected to live; dogs are special, but we know they won’t be around forever and grandparents dying before their grandchildren is the natural way of the world. Those deaths affected me and pushed me, but there is something inherently broken about burying a sibling only a few years older than you at this young of an age. It doesn’t seem right because it isn’t right. 

In 2013, I was forced to confront that I would lose my sister at a young age eventually. I watched as she was on her death bed before making a recovery and getting her first double lung transplant. My sister’s eventual death was on my mind frequently, always lurking whenever she’d have some struggle in Houston or when she moved back to Kentucky. I prepared for it, trying to comprehend how this was what would life would be for us, even as I knew how incomprehensible it was for her, my parents, and me. In 2018, that dreaded reality finally happened. CF forced me to grow up young; my sister’s death made me grow old young. 

Though I’m entering 2019 without Lyss, I’m proud of her in 2018. Alyssa didn’t lose her battle with CF; in fact, I don’t even really like using war terms like “battle,” “fight,” or “soldier,” to explain her or her life anymore. My sister didn’t have the choice to be born with CF, but she did have a choice to get a double lung transplant, and then another double lung transplant. She also had a choice in her demeanor and I won’t paint Alyssa as perfect; there were times we got into arguments because of her adherence or demeanor. Alyssa was a flawed person that wanted a decent life. Where she lacked in health, she made up for in her humanity. She was unbelievably good with kids, but at times, could be a bit quick to get frustrated with us. She was brave in her many hospitalizations and other shit she dealt with, but she could get pissy with nurses and doctors if she felt they weren’t listening to her. That’s a lesson I’ll take with me into 2019 – I am a flawed individual that has a lot of room for improvement, and that’s okay. I try too hard to be perfect when I know that won’t happen. My sister was a courageous person, but she never fought CF or rejection (she did use those terms, however), because that implies she “lost” her fight, a fight none of us could have ever won. My sister “beat” CF because she lived her life well, managing to leave a deep footprint on the world of those of us that knew her. There will always be a hole in the heart of all of us that loved my sister. That hole will shrink and morph and never fill, but I will live my life knowing that she was proud of me, she loved me, and continued her life as best as she could to leave positive memories entrenched in my mind forever.

I’m proud of my parents in 2018. Alyssa and I get called strong people often, but that strength was taught to us by our parents. I wrote them a letter for Christmas and in that letter, I was sure to tell them that any imprint on the world left by their children couldn’t possibly exist without their parenting. My parents are truly incredible parents, and even better people. They are authentic, compassionate, and decent, even when we disagree. We may fight, but they hear me out and listen to my side, no matter what. They have had to live for thirty years wondering how my sister and I would fare in life. When we were kids, they had to wonder if they were parenting us well enough to be our own people when we became adults as all parents must, but with the added difficulty level of us having chronic diseases. They don’t want pity and they have never seemed bitter to me. My mom’s compassion combined with my dad’s work ethic is a blend that allows any issue, no matter how immense, to seem accomplishable. I have much to learn from them – and I wouldn’t be myself without saying they have some they can learn from me. This year, they were required to handle a parent’s worst nightmare. They managed it as best as they could have, all while ensuring that my grieve, my physical health, and my mental well-being were managed as well. I’ve never felt that I was treated differently than my sister, which is something I know my mom has worried about endlessly. I wrote in that letter that I can see in their eyes a sorrow that I believe will never leave. They seem more vulnerable than they’ve ever been, and I mean that as a compliment. I adore my parents and I am so grateful that they’ve supported me in life like they have. Nothing I ever achieve would have been possible without my family.

I’m also proud of myself in 2018. I won’t tiptoe around this; in March, shortly after Alyssa died, I didn’t know how long I’d survive, not because of CF, but by my own accord. My suicidal ideation was terrifying; an omnipresent voice in the back of my mind telling me my suffering could be abruptly ended and met with an idyll nonexistence. I won’t say I “beat” depression or anxiety (see my point above), but I manage my depression and anxiety. That voice is still there at times, though much more infrequently. My anxiety isn’t as paralyzing and seems quicker to go. My lungs are healthy. We have better drugs on the horizon. I entered 2018 as a shy wannabe writer; I am leaving 2019 as a young, always learning writer and artist. I grieved openly, publicly, and unapologetically. I feel like I’m more “Tré” than I’ve ever been and I’m proud of that. I’m learning to listen more, speak softly, and chill on judgment and self-righteousness. I’m learning to be more understanding and compassionate every single day. 

In previous year review pieces I’ve written, I’ve regarded the year as either a shit year, or “hardest year of my life,” or something like that. 2018 will always be remembered by two things that happened in my world: Alyssa’s death and me becoming a writer. While the pain of one infinitely outweighs the joy of the other, they are inextricably linked. It was through writing about my grief and my mental health that I found a voice that I believed in. It was in writing about Alyssa’s life that my platform expanded, something I know she would’ve been psyched about – in fact, I can hear her voice saying “I’m so fabulous, I taught you everything you know, brah.”

I wouldn’t have made it through 2018 without the endless support from so, so many individuals. I’ve heard nice messages from so many people, kind comments on all of the pieces I’ve written, and just truly heart-warming decency from more people than I could have ever imagined. Alyssa touched a lot of lives, and her goodness was spread throughout so many people, and reciprocated by the support my family has received this year. I am dearly thankful for that support. I have more hope and optimism for the world than I’ve had in a long time due to that support. I believe in myself because of that support. Thank you all, sincerely.

I can’t write this piece without talking a bit to Lyss. 

So Lyss, let’s chat. I know you’re with me everywhere and all the time, not just because of the ink in my skin, but because the memory of you never leaves. I’m so proud of you and I will miss you for as long as I live. As I’ve promised you in the hundreds of times I’ve talked to you since March, I will set out to accomplish all the things we’ve talked about. I guarantee that. I will continue to make you proud. There is so much life left for me, and while it’s one of my greatest disappointments you won’t be physically by my side, I know you’d want me to live as positively as I can. I’ll try my best, sista. I hope you know that the moments of happiness that I feel and post about are because I’m trying to continue your hallmark: living a positive life along with the negative aspects of life. I love you, Lyss. I’ll never forget you.

TL

A letter to those struggling during this holiday season

To you,

I’m certainly no expert in grief, but one of the very first things I’ve learned about grief is that the world after that turning point is a series of firsts, all of which teach you something a little different about yourself, your emotions, your relationship with the past, and the world at large. Experiencing the holiday season for the first time without my sister is one of the hardest firsts for me.

Something else I’ve learned is that grief isn’t the same for everybody and it shouldn’t be. It’s an intensely personal thing – losing somebody, then navigating life after they’ve gone. Inevitably, your mind races, wondering if you could’ve changed the outcome, or if you buried all the meaningless issues before it was too late. The world around us moves forward, the earth continuously spinning while our internal world stops entirely.

The holidays are a time for reflection. They are a time for us to take stock of our world and to find a reason to be grateful. We are conditioned to scour the deepest parts of our mind for a reason – any reason – to be thankful since we’re told it could always be worse. We are encouraged to feel the full brunt of our emotions, of our grief, or to explore how we can figure out how we can find a way to continue on living in the most peaceful way but only to an extent that others think is “enough,” a point which may never come.

Your emotions, your thoughts, your feelings, all of the internal happenings in your mind are all valid. Your grief is valid and there is almost no way to grieve incorrectly (please don’t abuse any illicit substances to coat your pain or self-medicate).


The community of people that have felt the depths of sorrow that come with losing someone much too young feels like an exclusive club, albeit one that none of us enjoy being privy to. For the months between October and January, it’s like a never-ending onslaught of how great life is supposed to be and how far away that feels to us – Thanksgiving is a time to be thankful, Christmas a time to be introspective and merry, and New Years a time to take control of our lives to make the change we need to make to turn over a new leaf. This time of year is essentially a sensory overload in which conflicting emotions are rampant.

It’s completely okay to feel like this year is different because it is different. It’s also okay to feel okay or even happy at times, because human emotions and grief are weirdly complicated phenomena and there is only so much we can do to control how we process things that happen.

I’m not sure I would’ve believed somebody if they had told me a year or two ago where I’d be in the exact moment I am as I write this. I’m currently sitting in a coffee shop in Chicago on Christmas Eve, writing a letter to those grieving a loved one – a letter I’m honestly mostly writing to myself since I need it – as I grieve my sister. The last year of my life has been the hardest of my life, filled with my deepest lows but also with some of my highest highs, yet I feel like I should feel worse than I do. Somehow, I feel oddly at peace. I feel at peace knowing my sister’s life, one that was harder than most and filled with dreadful suffering, is over. It feels callous to say that, but she deserved rest, and my parents and I deserve peace. A world without constant worrying about my sister and where my sister suffers on more days than not is the one we’re confined to for the rest of our lives. We can’t change that and spending our precious time obsessing about how we could have changed the past won’t change the past and will only rob us of a better future we deserve and that Alyssa would have wanted.

Not everybody will feel this way, though. One of the strange luxuries of dealing with chronic disease is that I prepared for this future as best as I could have for years. No matter how much you prepare, you can never be fully ready for a world without that person, but it allowed me a mental respite and provided me mental fortitude for when that day came. I hope people who are struggling this time of year and all the time will practice some self-care, self-love, and forgiveness. Give yourself what you would give to somebody you love experiencing what you’re going through. Allow yourself to recognize that you are in pain and everybody’s pain is different, so let yourself feel your emotions and, if you can, learn from them. If you can’t, that’s fine too, but feeling the emotions is important.

Grief is such a powerful human experience because it forces us to consider our own existence. It feels wrong that the world exists with a person’s spirit one day only for it to be gone the next. Our relationships with others radically alter our brains, neural connections literally being wired and re-wired when we create memories with others. It’s why grief makes us feel so powerless; it feels like it should be simple to just accept that things have happened, but our brain craves that serotonin release that comes with positive experiences relating to our relationships. When we relive the memories we have with somebody, our memories are altered, molded differently by who we are today than when the memory occurred. That’s precisely why it’s so painful to envision memories of a good time with a loved one after they’ve passed; we can’t feel the same way when it occurred because it’s now plastered with a sheen of nostalgia and sorrow. This is also why grief is so abnormal; since our brains are all so different, with different genetic proclivities, different environments, different experiences, it’s impossible for us to all process heavy emotions the same way.

My hope for those that are struggling right now is that they – you, if you’re struggling right now – recognize that your emotions are okay. Time will continue moving forward and it’s okay if you’re not feeling in the holiday spirit right now. The people that mean the most to you will understand your emotions and your mental health is more important than forcing yourself to feel something that isn’t there. I hope that you can do what you need to do to recognize the people that you’ve lost in the best way you can, even if that means accepting that they are gone and that you have to allow yourself to move forward.

Know that there are people around the world experiencing a similar blend of emotions and that, even if you don’t know them at all, they are there with you in spirit, just as you are with those that are feeling this way too. Know that the world around you, in all of its apparent happiness, is not what you should use to gauge where you are in the grief process or where you are in life. There is no correct barometer to gauge how you are feeling at all.

I miss my sister so damn much. That pain will likely never go away entirely, but using that pain to be authentic, to write pieces like this, to hopefully take my time in life and embrace the full spectrum of human emotions, is what I take away from her life and her death.

Here is where I encourage you to give yourself compassion everyday, but especially this time of year. You deserve it. You are doing okay. You will continue to be okay. I am with you today.

With love,

TL

On the possibility of an early death

For half of my life, I’ve been aware of the life expectancy for people with CF. It’s a weird phenomenon to be acutely aware of how and a general idea of when you may perish, which probably explains why I was so prepared for Alyssa’s death. When I was born, the life expectancy for me was in the early 30s, whereas for a baby born with CF today, their expectancy is in the mid-40s. While life expectancy is a sort of weird measurement, the reality is that it’s more likely than not I won’t live a very long life, one where I can retire, one where I’ll be able to watch my children grow up (if I ever have them), or do whatever else comes with old age. 

But death isn’t what scares me. The way I view death is that it’s an endpoint, and the post-death existence goes one of two ways: either there is an afterlife, in which I expect it to more closely resemble heaven (I don’t really believe there is a hell but this is a different conversation); or it doesn’t resemble anything – in fact, it’s sheer nothingness or non-existence, which is in a way a form of paradise, where our spirits are eternally free from the stressors that come with existence. 

There are things that scare me much more than death. What scares me is a life half-lived, not in time but in fulfillment. I fear when I near my end days, I’ll spend some of my final moments wondering if I could have lived a fuller life. I fear the suffering and pain that come with dying of CF or lung-transplant rejection, a fate that my sister was basically victim to three times. I fear a timeline where my parents and family have to grieve me dying at a young age, just as they dealt with this year with Alyssa. It’s in this timeline where my friends are telling stories of the days we’re currently living over a couple of beers, reminiscing on what very well may have been the golden days (and I hope they’re giving me just as much shit as they do now). It’s these petrifying visions that push me to be adherent and continuously get better to ensure my health stays stable for as long as possible. These visions helped resurrect me from the depths of my depression. 

I often wonder if contemplating my existence encourages me to live life better. After all, thinking about my inevitable death – no matter how long my life is or how I eventually die – won’t prolong my life or change my fate. But maybe, my mind rationalizes, if I do ponder my existence, I can live a fuller life, mitigating the chances of my final days being spent in regret or disappointment. I can’t reduce the grief that will come for my loved ones, but leaving a mark on the world, whether that’s through my writings or their memories, will hopefully be there for them during tough times, just like my sister’s social media footprint has been there for me. 

I fear that my obsession with death and talking about it causes me to worry others. Most people definitely don’t like talking about death. Even worse, people usually don’t like to contemplate how they may die, how they will have left their mark on the world, or how they will process the death of people they love. It doesn’t help that I have written about my struggles with depression and suicidal ideation, possibly lending credence to the idea that I’m nearer to that place than I let on. I tiptoe around death like it’s not the object that unites all sentient creatures, all of us lurching towards a place where we all reside together eventually. Death is that, however, and American culture declines to treat death appropriately. We consider it to be too heavy, and we allow ourselves to push it out of our collective conscious, as if ignoring death will stymie it, when we all know that’s not true.

I tiptoe around this reality for other reasons as well. I know my parents are going to read this piece. I know people that love me and care deeply will read this. I also know there are some people that don’t know me well but have read my words and have become a friend to me who will read this. I’m careful talking about this because I don’t want people to worry, feel pity, or think about what might be ahead in our shared future. One of my goals with writing, though, is to be authentic and progress discourse. It’d be unauthentic of me to not ever acknowledge my thoughts on this. It hurts me to realize that others will be hurt to know that the thought of death injects itself into my life every day. 

I don’t fear death; I fear never feeling the cold breeze on the nape of my neck as I walk outside during winter days while listening to my favorite music ever again. I fear never tasting coffee again, or smelling the air after a springtime rain. I fear never being able to call my parents with exciting news again, or for that matter, having my dad get on me about being lazy while moving, or my mom nag me about telling her what I want for Christmas, just as they did earlier today. I fear the days of their lives where I remain only a memory to them, like Lyss is to us now. I fear the world where Duncan’s excited tail-wag after I was in the shower for only five minutes doesn’t lighten my mood immediately, where it shows me that I’m okay in this moment right here. 

I’d by lying if I said there weren’t days I didn’t feel intensely fucking bitter. Right now, as I type this piece in my dark “office” illuminated by a blue rope light on my desk and while listening to a Chill Vibes playlist on Spotify with a La Croix by my side, I realize that I am feeling simultaneously bitter and content in this moment. I feel content because I’m writing words that will live long after me, but bitter because I know there will be a time where I’m a transient memory passing through somebody’s mind while my spirit is resting, where I can no longer experience this strange moment of my existence. Bitter because I know this is something most 24-year-olds never have to think about, but content in knowing my preoccupation has hopefully made me better because of it.

I can reluctantly acknowledge that my mind’s intimacy with the concept of death has influenced my life already; in the ways above, but also in some positive ways. Writing is my way of lengthening my life. I’ve heard a quote, it’s one of those Pinterest quotes that you never really know who actually said it, but it’s something along the lines of We all die two deaths. The second of which is when we are forgotten forever. (Side note: I just watched Coco a couple of weeks ago and the movie is basically about this idea.) This quote is one of my reasons for becoming a writer. Writing allows me to permanently put my thoughts onto paper and out of my mind, thus releasing them. I hope my words and thoughts live on long after me, somebody stumbling upon them in the future, getting to know me just as I’ve gotten to know so many writers before me. 

My obsession with death has given me an innate sense of impermanence and how quick our existence is. My experiences with CF, grief, and the fears as a young kid of the specter of death have reinforced messages of compassion and empathy that my parents instilled in me at a young age. I try to be a reflective, considerate, and compassionate person because of my preoccupation with what it means to live a good existence. 

When Alyssa was a teenager, she was struggling with adherence. She had to switch physicians because our previous one had recently left. At one of her first visits, the doctor, in what was probably a good-faith but poorly-executed effort to improve adherence, asked Alyssa if she wanted to die young. This was the conversation Alyssa and I tabled indefinitely. I think we both knew there was no benefit to us discussing our thoughts on an early death, though she did leave us with some of her thoughts on it all at the end. I’ve thought a lot about death, but it has only been recently that I’ve so casually written about it. The reasoning for this was because Alyssa and I hadn’t discussed it much and, for whatever reason, I felt that it wasn’t fair to her for me to talk about death much. 

These types of experiences – learning at twelve years old you aren’t expected to live very long and then wondering if your parents treat you differently because of it (they didn’t), seeing your sister struggle so much and then ultimately take her final breaths, or even starting a career and debating if it’s worth starting a retirement fund because you’ll probably never reach that age – have a way of affecting how a person views the world. This remains nobody’s burden but my own, but for my writing to be the most genuine writing, it’s important I write about my thoughts and feelings.

Life will end for all of us. I’ve just never had the luxury of putting death on the back-burner and the possibility of an early death has both caused me enormous sorrow and also the ability to appreciate the minor, glorious moments of life. 

I don’t fear death. I fear no longer living.

tl

In the minds of everybody else, a different version of you exists

One of my favorite things to do is to stroll around Barnes & Noble and look at all the books. I’ve been a big time reader since I was a little tyke but during college, I wasn’t able to read as much as I would have liked (chemistry and physics textbooks have a way making leisurely reading less enticing). I believe books are one of the best ways to learn about topics, especially because books, rather than textbooks, are more likely to be interesting since they have to sell. Whether it’s a memoir, a biography, a nonfiction book, or a fiction book, books provide us an opportunity to learn others’ stories, as well as learn about topics that are important and interesting to us. I believe it’s cultivating this intelligence – intelligence about the world around us and about others’ experiences – that is one of the best things we can do with our spare time to improve who we are as human beings.

When I walk through B&N, I usually start in the science section. I love reading about other branches of science that I don’t have as thorough of a background in and it’s fascinating to me to find a science book that piques my interest. Some people have a special skill of making dense scientific topics accessible for the casual reader, and that’s a skill I admire and hope to improve upon myself, so those books are most up my alley. Aside from that, memoirs are my other favorite. In my experience, it’s impossible that all of our experiences perfectly parallel one another, no matter what. So, with the right storytelling and approach, any story can be interesting to read. Human stories are accessible because we’ve all been through something where we’ve learned valuable, possibly profound, wisdom that we wish to impart to others to prevent them from having to go through the same pains that we went through to learn them. With that being said, some things are common enough human experiences that we all have to go through them to learn those valuable lessons. Some things aren’t that common, though, and it’s those experiences that make the best fodder for personal narrative stories (*cough* why do you all think I write about CF, mental health, and grief so much?).

If you read my piece the other day (and from a couple of months ago), you know I’ve been struggling with a lot of guilt lately. Part of that guilt is questioning how I am as a person – Am I a good person? What defines a good person? If I experienced perfectly natural emotions, should that nullify the guilt? What exactly even are natural emotions, specifically during trauma?

When I was walking through B&N, I came across the biography section. An interesting thought occurred to me (though I think I read something along these lines on Reddit or elsewhere, I can’t really recall): in the mind of every person we’ve ever come in contact with, whether that’s in person, through writings, through social media, or has ever heard a story about us from somebody else, there exists a different version of us, especially compared to the version that’s in our mind. I also noticed what I think is a universal experience amongst people my age (possibly exacerbated due to social media, a topic I should write a piece about eventually): the amount we care about how we’re perceived is mostly correlated to how much we care about those people, outside of family (because the element of love provides a relatively strong sense of acceptance, so we’re less preoccupied with their perceptions; also they’ve known us the longest so they’ve seen every version of us that’s existed thus far). 

As humans, we exist on a continuum. It’s impossible that we are the same person we were five years ago, or a year ago, or even a week ago. If we were, it’s not possible for us to grow in our careers, our relationships, or our mental or physical health. Whether or not we want to, we are always growing, intentionally or accidentally changing, progressing and regressing. It’s our responsibility to learn from our mistakes, to delve deep into our minds and figure out why we made those mistakes, to probe into our subconscious to find our biases and purposefully alter those perceptions. People may have one experience with us years ago, and in their mind, we’re the same person, when that’s not the reality for us or people that know us today.

Because I am a writer and most of my writings are personal narratives or experience-based, I can see my growth in my writings. Sometimes, this can feel like a bad thing. Because I can see my growth, I feel shame at who I was when I wrote a piece in my past, or I wrote something and ended up disappointing myself with actions that don’t align with what I feel like is my current moral code. With that being said, I’m intentionally exposing myself to this because I believe it encourages me to be better. When I look at leaders, I consider the strongest leaders to be the ones that wear their flaws, admit when they fail, then try to be better. It’s the strength that comes with acknowledging that we’re not perfect and that we never can be that allows me to see somebody as genuine and as a teammate in this game of life. If I ever want to be a good leader or manager, it’s important I develop these skills of self-awareness, reflection, and genuine honesty with myself before I can expect anybody to care about what I have to say.

While I think it’s important to acknowledge how differently we are perceived by others based on their frequent or rare interactions with us, at the end of the day, we only have so much control about how we are perceived. This is where the skill of introspection is valuable; our version of ourselves that exists in our mind is the one that needs to be the most important. Moral codes are influenced by our experiences, our faiths, our beliefs, possibly our genetics, and so much more. This doesn’t mean we can just pick a moral code and then justify our actions based on that moral code. For example, one can’t just choose to believe all murder is acceptable, then identify themselves as a good person after committing murder because it aligned with their beliefs. Morality is complicated and certainly not a binary issue, but all moral codes aren’t necessarily equal. The point of this, however, is that there are going to be decisions that we make that some will deem as okay and acceptable, whereas others will deem to be inexcusable. Part of human nature is the desire to have simple answers, no matter how complicated an issue may be, and social media tends to only further flatten issues, making them out to be simper than they are. When considering this phenomenon with our inclination to be the best or perfect, it’s easy for us to become preoccupied with others’ notions of who we are; or better put, who they believe we are. 

One of my biggest goals with writing is to inject nuance into issues. In a world where we have infinite access to others’ opinions and knowledge, as well as social capital like followers, likes, shares, retweets, and only so much time, nuance is lost. I write because I like to clarify and probe my thinking. Writing is what has forced me to grow in my political, religious, moral, and scientific beliefs, because writing helps me to spot the incongruities in my thinking. Debating people with other opinions can help, but sometimes, that can cause us to double down and not think our opinions through clearly. When we write, we don’t have that choice; or maybe it’s my history of classes on rhetoric, ethics, and my experiences with CF that have caused me to think more deeply about these issues. 

When it’s all considered together, the straightforward reality is that it isn’t straightforward at all. Human legacies, motivations, emotions, and morals are complex; humans in general even more. I think the majority of us are just out here trying our best with the time we have. Let’s do more listening, thinking, and wondering, and less yelling, justifying, and doubling down. The world is a better place when we can admit our flaws, try to be better, and just accept that nobody is perfect.

Last Saturday, my cousin Maria sent me this picture from the day after Jenn’s wedding.

This picture is striking to me, and it feels poetic. It’s actually a candid picture – I’m pretty sure Maria went to take the picture and I get sort of embarrassed when there is a camera pointed at me. (Candid pictures were Alyssa’s favorite, too.) That’s one of the most genuine smiles or laughs I’ve seen on my face since Alyssa died and, to add to that, I’m wearing the 65 LaRosas shirt I designed in honor of her. This photo is what people see; it’s the Tré I choose to project in person. This is not an accident; when I’m socializing, I really do have the ability to immerse myself in the moment, so the laughs are real. But it’s also not who I am all the time, which I realize is not what people see. It’s this dichotomy – a happy Tré existing in the minds of people that see me on social media vs the struggling internal Tré in my mind every morning and night as I do my treatments – that reiterates the reality that we appear differently to every person that knows us. 

When people see me smile or laugh, I can see why it’s hard to imagine the guilt that overtakes my mind as I close my eyes and unsuccessfully try to sleep every single night. I understand it’s hard to imagine that I can joke so freely one moment, only to go home and feel so lonely.

Life isn’t simple and I’m not sure I want it to be. My anxiety has me convinced that a single interaction could ruin someone’s perception of me forever, and even if that is true, it’s certainly not something I can completely control. I can only hope to do right by as many people as possible in my time here and ensure that I’m always trying to actively grow during that time.

TL

the guilt i live with from alyssa’s final days

When I first started writing, I posted every piece I wrote almost immediately upon finishing it. This was for a couple of reasons. The first: the pieces I wrote were mostly written while in a moment of intense productivity or thought, so I wanted to share them and get feedback as soon as possible. The other reason is because, since they were written in those moments, sitting on the pieces felt disingenuous; if I went back and proofread them too much, it would change the tone in which they were written. Lately, I’ve been splitting my writing up more; I write on my column weekly (it gets published a couple of days later), less so on my blog (where I still publish it immediately), and daily in a word processor (where it just sits where only my eyes can see it). I’ve noticed in each of these my voice slightly changes. Don’t get me wrong, it’s all very clearly my voice, but I write with a bit of a different tone in each of them.

Something that has become increasingly clear to me lately is how much growing I have to do. Because of the hyper-polarized discourse that is the internet, I’ve (unfortunately) noticed my own self-righteousness and quick judgment, which is something I’m now working on daily. I’ve realized how quick to be outraged the internet makes us; social capital being a product of the hottest take, removing nuance – the very thing I hope to add to conversations through my writing – from the public conversation. I’ve realized my own hypocrisy at times, and how much I’ve started to lose sight of myself and my values, even when I write otherwise when I’m thinking clearly. 

But maybe most importantly, I realize how much my mental health has been affected by sister’s death. Because I feel like it’s important to be honest, the last couple of months of my sister’s life have weighed on my conscience a lot lately. Once it was clear to me that my sister’s life was coming to an end, there was a part of me that just wanted it all to be over, to just return to some routine in my life. No, that’s still me rationalizing it; to put it bluntly, a part of me was literally wishing for my sister’s death to come swiftly, so I didn’t have to watch her suffer. I justified it: I didn’t want her to suffer, she had no chance at a future, watching her just lay there as my parents and I watched was a cruel twist of fate for all of us. I know these thoughts were natural and I should be gentler with myself. It isn’t that simple, though. Anxiety has a way of convincing you your worst impulses are the best judges of your character, no matter how good your good impulses are. Writing about this has pushed me to unpack just how damaged I am. 

I know I’m a human. I don’t necessarily believe that I was wrong to have those thoughts and feelings. I loved my sister dearly and cared for her and fought for her. I would’ve done anything to have given her a fair shot at life. And for the last almost 9 months, I have missed her during every moment. I don’t question my love for her. I just can’t help but feel that there is something wrong with me for how I felt in her last days and how I may have unknowingly added to her suffering. 

Today, a video popped up on Facebook and Snapchat from a year ago. It was her announcing that she was out of rejection. I felt in the bottom of my heart that the doctors were wrong in their assessment; the biopsy just didn’t accurately determine that she was actually in chronic rejection instead of acute rejection. I still feel guilty that I had already lost hope and given up on my sister, even though I ended up being correct. I know I have so much room to grow and this is my vow – to you the reader, to my friends, to my family, to my sister, and to myself – that I’m committed to this.

tl

Some reflections on my short break from social media

Every couple of months or so, I decide to step away from social media for a few days. I have an app called Freedom that blocks the apps I want to avoid so I’m not even tempted to check them. I even have my buddy Corey change the passwords to completely eliminate any chance of logging on to any of them. Having these roadblocks shuts my mind off to the idea of checking them at all – as in, I may be at the gym and think “Oh, I commented on that person’s status, I wonder if they ever responded?” and then fall into the trap of checking it. I don’t even have the opportunity to check it, so it shuts down all thoughts of checking social media.

I do this for a couple of reasons. I’ve found that constantly being logged on is a major trigger for my anxiety. Each social media app triggers a different type of my anxiety; Instagram and Snapchat both trigger my FOMO or belief that everybody else’s life is so much more interesting than mine when I definitively know that not to be the case; I follow tons of news accounts on Twitter, so whenever I check that, I’m constantly inundated with the most depressing shit happening across the world; Facebook is where I feel compelled to engage with statuses I find interesting or controversial. All of this together is not great for my mental health. I believe social media presents an opportunity for amazing things, but with that being said, if it starts to trigger anxiety more than it produces any serotonin bump, then that’s when I realize I need to take a break. So when I take these breaks, I re-learn a lot of valuable lessons and also eliminate that habit of checking everything dozens of times a day, which allows for me to have that healthy balance when I come back.

What did I learn from this break?

1. Well, first of all, when you’re not seeing what other people are doing all the time, you become so much more in tune with what’s happening in your life. As dumb and naive as that sounds, it’s something that I think we all need to be reminded of sometimes (that includes you boomers or older millennials! If you have social media, it’s easy to get lost in it, no matter your age!).

2. Being bombarded by news, posts, statuses, likes, and all of that is generally not very healthy and is a way for us to disconnect from what’s happening in real life. Scrolling through social media is what we do when we’re sitting around doing nothing, or it’s what we do when we’re just trying to avoid something we don’t feel like doing. While there is of course a place for this, if social media is disrupting your ability to do daily or weekly things you should be doing, a break may be good for our mental health.

3. It’s pretty insane how much more vibrant our lives feel when we’re simply living and not posting about it. Hanging out with friends, bowling, going to grab a beer, or just getting a coffee all felt more interesting just because I was doing it to do it, and didn’t feel at all compelled to post to the world I was doing it. Again, I don’t think it’s inherently a bad thing to post on social media! I think our compulsion to document things is good because we have such a deep library of our lives to reflect on. We document things because we enjoy them…mostly. When we’re documenting things to brag, well, that’s when it’s a problem. Humans are always going to feel the need to broadcast their most excessive parts of their lives; social media just grants a simple platform for doing so.

4. A downside of my openness about CF, mental healthy, and my sister is that I feel like I have to document everything. Which means I feel guilty when my anxiety is getting bad again, or worse, when my depression is. On my blog, Facebook, and Twitter, my writings and posts are deeper and reflect the waves that come. On Instagram and Snapchat, my posts are generally livelier, documenting my life with my friends, dumb, funny (at least they’re funny to me) thoughts while I’m walking Duncan, or pictures and videos of Duncan being adorable. I recognize that I’m willing to express sadness in my writings, but I’m a lot less likely to openly explain or talk about these problems when it’s me talking. This also compounds my guilt; how can I post a Snapchat of me joking around at 3pm then write a blog post discussing how my depression is worse than it’s been in a while at 6pm? To the people that only see the Snapchat, the response is “Wow, Tré seems to be doing really well, all things considered.” Conversely, people that only see the blog post think I’m struggling more (which is probably the more accurate portrayal). To the people that see both, it probably reduces how they view one or the other. But the reality is: this is my life! There are days where I’m feeling really well, days times when I feel like depression is kicking my ass, but the harsher truth is that these are my days. My emotions can swing from one extreme to the other in the same hour if something reminds me of Lyss. I’ve accepted I want to be open about my life, but taking a break from social media grants me the opportunity to take care of myself without concerning myself with how others are viewing that.

   • This lesson itself encapsulates both the positives and negatives of social media. My writing is what keeps me afloat and it touches peoples’ lives, but social media, where I have capitalized to expand my writing, can subtly force me to be a little too active sometimes.

I didn’t have some grand epiphany after being off social media for five days. But, I did get better sleep, I was more productive at my job and in my life, I felt generally better in regards to my mental well-being, and remembered that life is bigger than any single social media platform.

I also realized how fortunate I am to have people that read my blogs or columns or care about what I’m doing with my life and that they keep up with me on social media. I hope I’m a force of positivity on social media or at least a conversation starter. I love social media and being involved in it, but just like we need a break from exercise sometimes, it was a much needed break.

TL

Preparing for Our Family’s First Holiday Season without Lyss

I had just gotten out of traffic that seemed to exist for no reason at all when my sister called me to tell me what the biopsy said. I was on my way home from the gym to get ready for The Cold Boys Friendsgiving (we call our group of friends The Cold Boys). Her lung function had been steadily decreasing for over six months – one of the telltale signs of chronic rejection. I had tried to ignore what seemed obvious. The biopsy came back negative; Alyssa wasn’t in rejection.

My eyes welled up as I slammed the steering wheel. I knew this was a false negative. I knew the evidence – the majority of the time biopsies can’t accurately determine if a patient is in chronic rejection, they can only really definitively determine acute rejection. I knew what was happening – Alyssa wasn’t really feeling better, so the signs didn’t point towards her being out of rejection. It was clear to me that she wasn’t out of rejection, but rather, the biopsies didn’t indicate acute rejection. It seemed clear to me at this point Alyssa was absolutely in chronic rejection. 

I was furious. Why were we being told that Alyssa was in the clear? Alyssa wasn’t happy about the results, or at least she didn’t seem to be. I’d venture to say that’s because she knew, too, what was happening. I sobbed as I felt an inexplicable blend of emotions. I’m not a transplant doctor, so maybe I’m wrong? Maybe she’s out of rejection, maybe her lung function is just down, but it'll bounce back soon enough. They told us she's out of rejection; if she was in chronic, wouldn't they emphasize that? I am wrong; she's out of rejection and we need to be thankful and look towards the future. I should be ecstatic.

For the next few days, I buried those feelings of doubt and managed to suspend that lingering suspicion long enough to post the following picture with a caption that read:

“We received the overwhelming and fantastic news that Lyss is out of rejection after 4 months of photopheresis!!!! (She still has to continue treatments.) It’s really hard to overstate how incredible this news is. As I’ve gotten older, I’ve become more & more aware of how important it is to stay in the moment & appreciate the moments as they come. With news like this, I like to reflect & recognize how fortunate we are at this current moment. At any given moment, we can be overwhelmed with a series of bad circumstances & I think finding the good, as small as that good may be, is critical with moving forward with our lives & becoming stronger as we move on. So to celebrate, here’s a picture of me making fun of Lyss always making model poses in every pic. Love ya sista!”

The subtext is clear in that message: I was trying to convince myself we had just gotten a win, but I knew in my heart that we had only received a bit of time of blissful ignorance. I remember being frustrated that Lyss didn’t post it sooner. We waited a couple of days to update people. I reminded her how many people were constantly looking for her updates, so she had a responsibility to tell people quickly. It seems obvious now why she waited. She knew that this would give people hope and that people would think she was back to being healthy, when in just a short time, she’d have to update people with the real news.

Less than two months later, they told us she was in chronic rejection and that she should make the most of her time.

---

Christmastime, to me, has always started on November 1st and gone until December 31st. School seemed exciting to me during this time, the cold days didn’t bother me, early sunsets were exciting as they gave me a chance to see Christmas decorations going up. I loved this time of year because it meant I’d get to see my extended family for Thanksgiving and Christmas. (For what it’s worth, I love both Thanksgiving and Christmas and have always considered them to be different sides of the same coin; this time of the year is a time to reflect on life and find the things we should be thankful for, while also trying to be the very best people we can be.) As a kid, of course I loved Christmas for the gifts, but when I look back, I don’t so much remember the gifts I received as much as the happy memories I formed during this time of the year.

But as I’ve gotten older, my extended family has spread out and, sadly, thinned out. We’ve lost quite a bit of family lately. Spending Christmas or Thanksgiving at Nanna and Nonno’s was a family tradition, something I looked forward to every year. Now, that’s no longer an option. Now, my family is 25% smaller without Lyss. 

This was the time of year that my mom and sister came alive. Together, they were the best gift givers in the world. I’m worried about how this time of year is going to affect my family. It’s going to be hard on us for all different reasons. Grief reflects life, there are always going to be ups and downs. This time of the year will naturally be harder than other times because it’s a reminder of what our life was like for so long, and how it will never be the same. It’s during this time of the year that people rightfully constantly talk about family, loving others, and being grateful. But just seeing how other families are flourishing at this time of year, able to live normally without any fear that it may be their last Christmas as a family, hurts. I don’t think I’m a bitter person, but this feeling is the natural by-product of a tough year. 

How to approach the Holiday season is not simple. I’ve talked to my parents; do we start a new tradition with the hope that we’ll create new memories without bringing too much attention that Alyssa was a part of our previous traditions? That doesn’t feel right, it feels like we’re confining her to our past. Do we continue old traditions? This doesn’t feel right because it’ll take years and years of continuing these traditions until we forget what it was like for Alyssa to be a part of them. A mix of both? This is probably the best answer, but at the end of the day, it’s going to be hard no matter what we do.

The Holiday season is when I feel like people are more inclined to try to be good people. It already hurts without Alyssa, but I still love this time of the year. I imagine I always will. As you celebrate the Holidays, I encourage you to take the time to consider how this time of the year is going to be hard on those of us suffering from immense pain. This is the time of year when kind messages or gestures mean more than you could ever know. Please consider reaching out to somebody you know that is struggling and being there for them during this time of year.

I want to conclude with one of my fondest Christmas memories with Lyss. Alyssa was a huge fan of Hanson – you know, the three long-haired boys that sang that infectious ear-worm pop hit “MMMBop” – growing up. Hanson also has a Christmas album titled “Snowed In” and it’s amazing. Me, Lyss, and the cousins loved listening to this every year. Christmas day was my favorite day of the year, and on Christmas morning, Alyssa and I would play this album as my parents cooked breakfast before we opened gifts. I’m sad I’ll never be able to have a Christmas day like this ever again.

tl

A note on male compassion; or why we need to stop repressing our emotions

For the sake of clarity and writing from my own personal experience, I am writing regarding traditional binary gender roles, though I know gender is a spectrum. The terms “masculinity” and “feminity” further imply this binary, when it’s far more complicated than that simple reductive notion.

To me, one of the most important parts of life is human connection. We can have the best job, excellent health, plenty of money, or whatever else you can think of, but without having vibrant, loving human relationships, I believe it’s impossible to feel the highest levels of joy.

Developing these relationships with other people requires both participants to be vulnerable and compassionate, however. This isn’t necessarily true for everybody, but for most cis-gendered, heterosexual men, we’re socialized to associate vulnerability and compassion – especially with other cis-gendered, heterosexual men – to be effeminate, to be not masculine, to be unmanly, to be homosexual (“no homo bro”). On top of this toxic masculinity, we’re socialized to believe that just being open about our emotions, our hurt feelings, our weaknesses, is also not masculine. For adult men, unlearning this deeply embedded conditioning is extremely difficult and requires willingness to go against what you’ve believed for years or decades. 

Not only are these notions harmful for our mental health, toxic masculinity also robs men of the types of human connections with others, especially men, that we need to be the best that we can be for ourselves and for the people that we love. 

I have made the choice to be vulnerable about my life and my emotions. I think it makes me a better writer if I’m more honest about my emotions and I’ve been humbled by some pretty amazing comments about my openness meaning a lot to people, which only encourages me to continue being open. Writing about my emotions has helped me thoroughly develop my communication skills. I recognize this isn’t true for all men; because of our life-long conditioning, if we don’t hone the language required to talk about our emotions, it’s obviously difficult to communicate these emotions.

For many men, I’d argue it’s not as hard to have vulnerable, platonic relationships with women – edit: on reviewing this, I think this may be incorrect or slightly misleading. I’ve legitimately heard men say there is no point in having friendships with women if sex isn’t likely. I think that’s because the traditional (becoming obsolete, which I think is good) parental roles are that the father is the (usually) not very emotional breadwinner whereas the mom is the emotional caretaker. The role of being the burden for male emotion has long been on the spouse, mother, or female friends of the man. Learning how to deal with our own emotions, as well as communicating with the men in our lives, is the right thing to do for ourselves, our friends and loved ones, and the women that have been there for us.

I’ve had some wins lately, but 2018 will forever be regarded as a shit year to me. It’s hard not to view it as such. I will always remember it as the year we got Alyssa’s terminal diagnosis, then lost her, then grieved her for the rest of the year (and our lives). Everything that has happened this year has had the grim reality that is my sister’s fate running in the background. Throughout my life with CF and my sister’s health, I have had resounding support by many, many people. I’ve needed every ounce of that support through it all, too. 

Something I worried about when I wondered what life would be like without my sister was suddenly becoming an only child. The truth is, though, blood isn’t the only thing that can make people as close as siblings. The friendships I’ve developed with my guys feel like brotherhoods. The love I have for them is fundamentally part of who I am. I would not be here without having their support, whether it was a shoulder to cry on, a beer or coffee late at night just to listen to me vent, or to be there for me in moments when I needed to get my mind off of life and just laugh and live life. I’ve never been afraid to express my love for them to them and I hope I say it enough because I never want to live life having not said it enough to the people that meant the world to me. 

Being open about my life with CF means that vulnerability is part of it – I’ve discussed, joking, casually, and seriously, my life expectancy with friends, a discussion that inevitably brings people closer. I’ve noticed that my ability – eh, tendency is probably the better word – to discuss heavy topics opens up the ability for both of us to talk about our emotions, fears, and concerns. I don’t think it’s possible for a relationship to ever be more than an acquaintanceship if you can never get near heavy topics. I don’t mean to imply it’s all me that is doing the heavy lifting in broaching these topics because it certainly isn’t, but I’ve noticed that if I’m willing to talk about my emotions regarding CF, other people are more inclined to talk about the heavy stuff. These relationships with my male friends have allowed me to thoroughly process the emotions that come with having CF and losing a sibling. 

Everybody processes emotions differently, and that’s okay. What isn’t okay is repressing emotions and preventing ourselves from feeling the emotions that are part of being human. I also want to make something clear: considering vulnerability as homosexual is expressly homophobic. Viewing effeminacy as homosexual is a tired trope; just as it’s also exhausting to view vulnerable men as effeminate or homosexual.

The blunt reality is that emotions are neither masculine nor feminine; emotions are human. Men, you don’t have to feel compelled to share your emotions with everybody. There are relationships we all have where discussing our feelings just isn’t that big of a part of it. That’s fine. But repressing emotions, or alienating those that are honest about their emotions, or labeling emotions in a way that discourages people from sharing them – for the record, labeling having emotions as being “gay” says more about the person labeling the emotions than labeling them as “gay” could ever be – is unacceptable. 

We are better people when we are honest about our feelings: it helps to empathize with others; it nurtures relationships; it brings us more vibrancy and joy in life; and lastly, it makes the world a better place for all of us.

Men, it’s time we take responsibility and get better about how we handle our emotions.

TL

Our Cousin Jenn's Wedding

As I reflect back on the last vacation we took as a family – a spur-of-the-moment trip to Los Angeles – I knew Alyssa wasn’t fully there. We took the trip less than two weeks after we got the news that there were no remaining options, including ruling out retransplantation, for Lyss after this bout with chronic rejection; this was, in the barest of terms, a death sentence, and Alyssa knew it. The day we got that news, we were huddled together in a Lexington hospital room on January 31st, 2018. I think we all knew the news was coming, but hearing it is so entirely different than thinking it. Alyssa buried her head, surely overwhelmed with the future laid in front of her. My mom sat speechless as my dad and I absorbed the news, grasping for straws in any way we could. Forgive me for my memory being opaque, but I believe I mentioned something about how long we could keep her stable, and I think one of us inquired about retransplantation options elsewhere.

We knew what was in front of us, but for the first time in our lives, Lyss’s fight felt…over. How do you fight when there’s nothing to fight for? What is fighting at that point? Is it preserving quality of life for the most days? Or maximizing life, no matter what that is? Lyss didn’t want a trach or vent. She wanted to be coherent. We knew what that meant for the future.


I don’t know if I speak for my parents here, but for me, this was the only time during Alyssa’s life that I felt like our fight was opposite one another. Alyssa had to directly confront death as it barreled toward her with nothing else to look forward to. We had to abstractly confront death, to confront the absence of Alyssa, fearing only the pain that would overwhelm us after we lost her. When I look back at her final days, I think about how simple my fight was because it wasn’t a fight at all. My sister had to prepare for the coming of death, the most ghastly of experiences that we all inevitably lurch toward; probably the only experience that every single one of us will share as a species, aside from birth. I had to wonder how I was going to move forward, something I’m still confronting.

The fact that my sister has passed away is still existentially gripping for me. I’m not going to pretend that I don’t think about death all the time because I very clearly do. I’m fascinated with it, but it’s still an abstraction in my life. My sister wasn’t like me in that way so I don’t know what thoughts went through her mind. All I can say regarding all of this: death is scary as shit. The concept of existing one moment and then not is just something my mind can’t possibly fathom. Whether you believe in an afterlife or a deity or not, it doesn’t change how unfathomable our very consciousness is.

All of this is to say that our experiences are moments that are intensified – maybe even defined – by who we are in those moments. My sister and I, we dreamed of moving to LA. This was one of the those things we shared and obsessed about together, both of our eyes lighting up at the thought of spending our lives in the wonders of Southern California. When I started DJing, Alyssa always told me she would style me when I performed at Coachella; I always told her I would help her write whenever she inevitably became a fashion consultant. But our LA trip didn’t mean anything to her. How could she enjoy it? She knew she would never move out there, that her 29 years on this rock were coming to an end soon, and she would never accomplish her dreams. I both loved and loathed our time in LA, embracing the warm air while knowing that whatever future I had, in LA, Cincinnati, or elsewhere, was going to be without my sister by my side.

In a healthier life, Alyssa would have been a fashion consultant, designer, blogger, interior decorator, and event planner. She was so special at these skills. For me, all of my skills and knowledge have come through meticulously learning through books and practice. I really don’t know how Alyssa became as good as she did at what she did, but she was so talented at it. It broke and continues to break my heart that she never got a realistic opportunity to pursue that. Whenever I get married, I’ll get married that day knowing the wedding just won’t be as beautiful without my sister’s talent.

This past weekend was my cousin Jenn’s wedding. Jenn and Alyssa were best friends, close in a way that I can’t describe because they shared a relationship that Alyssa and I didn’t have (which is an okay thing of course!). My sister was funniest around Jenn and the cousins. (Side note: One thing I always admired about Lyss was her ability to be positive and light-hearted whenever family was around, no matter how she was feeling. She never, never wanted anybody to feel sorry for her.)

In a fitting tribute, I was honored to be able to walk down the aisle in my sister’s place, wearing a fly ass suit that Alyssa would have been proud of, carrying a symbolic rose. Jenn’s wedding was an event Alyssa desperately wanted to be a part of, and I know it devastated Jenn and Matt that she wasn’t able to be there, just as it devastated all of us. But in some ways, I feel as though this was fortunate.

As I mentioned above, I believe our experiences are defined by who we are in the moment. Something I’ve learned about life is that you can’t be angry about the circumstances you’re sometimes thrust into. Instead, I try to reflect and look at the many possibilities that could have happened. It seems that the circumstance that ends up occurring is so often the one that’s most perfectly in the middle, not necessarily “average” as in mediocre, but rather the beauty of it is perfectly mirrored by the pain associated. Don’t get me wrong, I definitely believe that things can go better than they do, but with the benefit of hindsight, I think we can see how the pain that came with the journey opened up the opportunity for beauty to show itself. If you know me, you know I’m not one to always see the beauty of life; in the moment, I can be cynical, irritated, annoyed, whatever, but when I reflect, I can see how things tend to work out well even if we don’t realize in the moment.

For my sister, the LA trip was representative of her last trip, the last of our family trips, and of a life that never existed and never will. I can’t imagine how any person in her shoes could find the beauty in that. For me, the LA trip represented a future that is still possible for me, a future where I’ll try to bring my sister along in whatever way I can. Even though she wasn’t herself, I will forever hold that trip dear because for those couple of days, I felt like we didn’t have to rush back to the reality; those days permanently suspended in my mind as the last figment of normalcy I’d ever experience with my sister and my family as a whole. I knew what that trip was when it happened and I chose to view it as such, which is why I believe the experience is defined by who I was then: Alyssa’s little brother, knowingly clinging on to the last family vacation.

When I think of the possible paths Alyssa’s life takes after that trip until Jenn’s wedding, I see only a few possibilities:

• the one that happened: she didn’t make it but a couple of weeks, which gave us half of a year to grieve;

• she survives longer, maybe giving us more quality time with her, maybe not, possibly prolonging her suffering and shortening the gap of grief to the point where the wedding is harder the shorter the gap;

• she survives until the wedding after seven more months of chronic rejection, meaning it’s quite likely she’s on oxygen all the time. In this scenario, she isn’t able to be a part of the wedding as much as she liked, from helping set it up, to walking down the aisle and dancing. She had spoken to us how sad she was that she wouldn’t get married; in this scenario, that sadness is magnified.

I hope evaluating life like this doesn’t sound callous, but this type of examination allows for us to reflect and learn from life. Of course Alyssa wanted to be a part of Jenn and Matt’s wedding and I wish she could have been there for both of them. But I feel some solace knowing we had a decently long amount of time to grieve and adjust our lives a bit before the wedding, and I feel some comfort in knowing my sister no longer has to feel sad that she won’t get married.

To add some sort of poetic justice for her little brother nagging her so much over the years, I was the one that didn’t feel well this trip. Thursday morning, I was having significant abdominal pain and was worried I had a bowel obstruction. The pain was so bad I actually had to leave the rehearsal dinner – one of the first times I’ve had to leave something due to not feeling well in quite some time. I thought back to all of the times I pushed Alyssa to deal with her pain and be there for some event, thinking I was being a tough little brother and not realizing maybe I was being a bit unfair. I tried to channel her strength, but the pain was becoming unbearable. It made me realize how much my sister pushed through to make it to so many events in her life. It was yet another learning lesson in a long series of learning lessons. I know she wouldn’t be mad at me, but instead laugh at me and tell me “I told you so.” Such is life, I suppose.

There is one other moment I want to talk about specifically. During the reception, Matt’s best man Mike was giving a speech. My mom had told him a bit about Alyssa and Jenn’s relationship so he could talk on that. As he spoke about Lyss, I made eye contact with Jenn and Maria, all three of us with tears streaming down our face – the only tears I shed all weekend – and in that moment, I felt Alyssa’s presence. I know Alyssa was there with us this weekend. To be honest, as much as I miss her, I really feel like she’s always around. I feel it when I write these pieces, and as I write this sentence, I think it’s because I know she’s reading them as I write them, so it feels like I’m writing letters to her all the time.

It didn’t hit me until a few days after the wedding that Jenn’s wedding fell on the seventh monthaversary of Alyssa’s passing. After six months, I told myself I’d stop writing monthly tributes to Lyss. I told myself I’d start moving forward and processing the grief in other ways. Maybe Lyss doesn’t want me to stop writing these tributes quite yet.

I’d been excited for this wedding weekend for the two years Matt and Jenn had been engaged. I knew it was going to be a good time. I don’t think I ever envisioned that I’d be the person I was during this weekend, though – a grieving brother, a writer, a scientist, and a person exploring the world so openly and publicly. Because of the person I am now, I feel like this weekend was an important step in my grief process. This weekend was one of the firmest reminders for me that life has a way of moving forward, whether we want it to or not, that we can find ways to be okay, and most importantly, that we can find ways to accept that our dearly departed would want us to be okay ourselves.

tl

World Mental Health Day

A note: this piece is my own experiences with mental health issues. A trigger warning for those affected by depression, anxiety, or suicidal ideation. Please be cognizant that these issues may be discussed. I am not qualified to dish out advice on this other than what I’ve learned from my experiences and this isn’t intended to encompass every possible experience with mental health issues. 

Explaining a panic attack to somebody that has never experienced one is about the same as trying to explain what a color looks like. It’s not really possible and it’s mostly useless. 

For me, a panic attack can manifest itself in two different ways. The first is what I’ll call the black hole. This is when my body feels like it is collapsing in on itself. Catching my breath is difficult, my heart beats fast, I feel like I’m going to start sweating profusely. All of these physiological signs of elevated central nervous system activity then triggers the mental feeling of anxiety. When I’m caught in one of these, it’s hard to imagine I’ll ever feel okay again.

The other is more of a generalized panic attack, and this is more of my common anxiety manifested a bit deeper. It’s that feeling of needing to accomplish so much in so little time, only to realize I’m never going to accomplish everything I need to. Then I wonder, what even is the point? I’m not happy and I’ll never be happy or fulfilled or adequate so why waste my time. It’s hard to be motivated to do anything during this sort of generalized panic attack, so I’ll call this type a hopeless panic attack. 

Other than panic attacks, generalized anxiety is debilitating in many ways. I’m well aware of my triggers and I know how to “fix” the anxiety, but that’s just it: it doesn’t matter. It still comes. The skill is dealing with it to get back about my day. Until I experienced these deep feelings of anxiety and depression, I never knew how somebody could feel like that. Mental health is so difficult to explain, partly because it can often feel foolish explaining our feelings. So often when I explain what I’m anxious about, I feel ashamed as the words exit my mouth. How could I be anxious about that? That’s so dumb. But it isn’t dumb, it exists and it’s real. 

“It exists and it’s real.”

That sentence alone is what set my life on a different course. I ignored my mental health for far too long, convincing myself it wasn’t “bad” enough or it was good material for my writing or my art. I wanted to be a tortured artist because I believed it would make me great. I romanticized my depression and my anxiety and considered it to be less than others, meaning it was less real. None of this was okay. It took too long for me to realize it. It wasn’t until Alyssa’s death that I realized I had to do something about it. I was legitimately concerned I would only reach deeper into a depression that would eventually feel insurmountable. Not everybody realizes this soon enough. No matter if they do or not, all are equally deserving of our compassion. I was particularly fortunate because of my healthcare situation, my support system, my writing platform, and many other factors that came together at the time. 

The gross reality is that mental illness is treated poorly in the US; it is both stigmatized and lowly prioritized in our broken health care system. These factors combined with the already huge burden that mental health is means that it can be nearly impossible to find the most appropriate care. 

I was so impressed with the solidarity I witnessed today on World Mental Health Day. The world is a better place when we work together and we find common ground, especially when that common ground is based in compassion. I ask that you be understanding of others, whether or not they are affected by mental health issues and whether you’re aware or not. Just be good to others, whatever that entails, and certainly, absolutely, do not ever perpetuate the stigma around mental illness.

TL

Letter to My Younger Self

One of my favorite writing series I’ve seen is The Player’s Tribune’s “Letter to My Younger Self” where professional athletes, well, they write letters to themselves in the past. I think it’s a fascinating way to reflect and adds a heartwarming sort of mentorship sheen to a personal narrative piece. So, for this piece, I’m writing a letter to myself, in the early days of adulthood: the summer between my senior year of high school and college.

To incoming college freshman Tré,

Hey kid, you better brace yourself. The next six years of your life are not going to go the way you’re expecting right now. I know right now you think that at twenty-four, you’ll be halfway done with medical school, after studying chemistry and biology at Kansas University. I just read some of the notes you posted on Facebook – about Nonno, life with CF, and college – and man, you’re going to go through some shit that’s going to make you reconsider those feelings quite a bit. 

You’re going to grow more cynical about the world around you. I know, I know – how could you let this happen? Being idealistic and and optimistic is one of the traits you pride yourself on, so becoming jaded by life’s experiences probably sounds like defeat right now. And since I know you so well, I know you want to argue with me about all of this, about how you’re not going to change that much – after all, I’m sure 24-year-old Tré would argue with 30-year-old Tré about stuff, so I don’t think I’ve changed that much in that regard. I’m still idealistic and optimistic, but just a little more jaded to protect myself now.

Your freshman year of college will be transformative. You’re going to struggle. You’re going to have the most pervasive feelings of self-doubt that you’ve ever had, and there are going to be lots of lonely nights, where you’re going to sulk about how much everybody else seems like they’re enjoying college more, especially your Kansas and Kentucky peers. To be honest, you’re probably going to obsess so much about your home friends that you never really give Kansas the shot it deserves. And in a strange series of events, you’ll remain close to both groups of guys for the next six years. 

It’s going to take you far too long to realize the importance of family. Unfortunately, some things you’ll realize too late. You’re going to become so preoccupied with college and relationships with other people that you aren’t going to be as there for your family as you should be, especially when they’re a thousand miles away. I’m not going to lecture too much on this because you’re still a dumb kid in a lot of ways (sorry, it’s true). 

You need to be there for your sister. You don’t realize it now but she admires you far more than you think. She wears a tough exterior because she’s concealing a lot of her inner turmoil to be strong for you, mom, and dad. You’ll be strong in the months she starts getting sick; you will commute to Kansas City several times a week to visit her at the hospital. You’ll receive one of the hardest phone calls of your life, in between making the decision to transfer to Kentucky and just before finishing up with freshman year of college, where you hear the news that “there are no remaining options for Lyss.” Somehow, and buddy, I still can’t believe you manage to do this, but you won’t take any time off of school during these turbulent months. You’ll find a way to make time for everything, sacrificing sleep and a social life. But through all of this, you will carry the immense guilt of knowing that you made the decision to transfer back to Kentucky while your family is headed to Houston, where your sister is going to wait for a double lung transplant. And here’s another thing you won’t realize until years later: your family never makes you feel shitty about that decision, when they would have been completely justified in being upset with you (maybe they were, I still don’t know).

All of that happens in the next year of your life, so yeah, your future is pretty crazy.

I’m going to spare you some details. After all, if I ruin everything, then life will become boring. Life is a lot of things, but one thing it’s certainly not is boring.

What I want to tell you is that you just have to keep doing you, kid. You have a bright future ahead, just not by the standards that you think define “success” right now. That’s okay, your standards of success will change and you’ll be better because of it. 

Life has a funny way of teaching things you need to learn in the moment without knowing you need to be taught those things. Ride those waves of life and learn from them. You love school right now and eventually, you’ll learn how to utilize the art of learning to approach life in that way.

If you need to know things will be okay, I’ll tell you this: I’m writing this piece at the Florence, Kentucky Starbucks for my blog, with four tattoos, one of which is commemorating Alyssa’s passing. I’m now a scientist at Cincinnati Children’s, working alongside the very people that took care of you not too long ago. I’m more scarred than I would have imagined when I was you. I’ve weathered a painful six years and I now get jittery when I drink coffee (oh yeah, by the way, you’re going to start drinking coffee). And for one more thing that you won’t believe: I have blonde hair now.

Life feels okay. After writing this letter to you, knowing what happens in the next six years, I’m confident things will be okay for future me.

TL

A thank-you for Alyssa’s birthday

When I sat down to write this piece, I fully intended it to be more of just a thank-you note that I’d post on Facebook. But as I reflected on the last nearly seven months – and actually, my entire life – I realized I had a bit more to say than a simple thank you.

When I was a senior in high school, I started to really think about my long-term future, and ultimately, the rest of my life. I aspired to be a doctor, but, as convinced as I was that that was the right career path for me, I’m not sure if I ever wholeheartedly believed there would be a day where I’d become a physician. It wasn’t a matter of if I could do it, not that it would have been easy; I wasn’t ever the smartest or hardest working person in my classes, but I hoped I’d muster the strength to make it through undergrad and eventually medical school.

No, the reason I wasn’t sure I’d ever become a physician was far heavier and more morbid than that. The truth was that I wasn’t sure I’d live that long. A benefit of thinking about my mortality and my emotions has been that it has made me a more effective communicator. It’s why I’m a writer now (and also, I’ve become a fan of the dramatic). I didn’t want to acknowledge these feelings because I was protecting both my family’s and my emotions. I never had the courage to discuss my mortality with my parents and I never wanted to broach that subject with Alyssa; I was far too concerned it would make her face a reality that she was consciously avoiding.

But as I grow older, wearing my emotions on my sleeve is only becoming more intoxicating. I’ve written pieces about science, social commentary, and other subjects, but it’s evident that the pieces where I discuss my emotions are the ones that people are most drawn to. I don’t believe that I’m a particularly interesting character, but rather, people are attracted to human stories. We love reading what we can’t put into words and seeing others experience emotions we didn’t know anybody else experienced. I believe that’s why these pieces resonate so much more than my others. Science is interesting! Social commentary pieces are interesting! But…that’s all they are. They don’t necessarily inspire us to be better people or invite us to live a more engaged life. Personal narrative pieces do, in ways that aren’t completely obvious to the writer or the reader.

All of this leads me to one concise point: thank you. Thank you to anybody that has been a friend, that has said something nice to me or my family, or really been even the slightest bit kind or positive to me, my sister, or my parents. I realize people have expended energy in worrying about my family and that means more than can possibly be expressed in any sort of thank you.

I am both a writer and scientist because of that support. For the years I was in college (writing about this seems arrogant, but I swear it has a point!), I was told on many occasions that people were excited to see me help discover the cure to CF. During that time, I shrugged it off as a thing people said as sort of encouragement or endorsement. I obviously appreciated these comments, but I really didn’t think about them because I never thought I’d be involved in that. As I reflect, though, those comments probably held more water than I anticipated.

We are very much a product of our circumstances. The fact that people have believed in me – for whatever reason that may be, whether it’s because of a reputation I’ve curated or if it’s a reputation others have curated for me – is affecting me more today than I expected. Over the years, when I reflect, I just sort of assume that people believed I’d be involved with CF research because I enjoyed science. While that may be partly true, the fact that people have believed in me – in science, writing, or otherwise – has encouraged me to pursue whatever the hell I want to. Through working in a science and talking to others and writing passively, I’ve realized I have unique stories to tell and that others are interested in consuming those stories.

I guess what I have to say is this: thank you for giving me a platform. Thank you for giving me a reason to believe I have valuable words to share and a platform to share. I have so, so much more to share, but the continuous encouragement and belief in me as a writer and a person is the crucial element to me continuing to pursue my dreams.

Thank you. I will never be able to thank those that have been supporters and readers, but I promise to try.

Reach out to me, let’s talk. I want to talk to you personally about ideas and feedback. If you direct/private message me, I will give you my number.

Thank you for being there for my sister over the years. The people that have been there for my family have been the ones that are directly responsible for giving Alyssa and my family a platform. Simply reading this stuff means more than any one person could ever know. Thank you sincerely.

TL

Reflections: Looking back on 6 months without Lyss, Her 30th Birthday, and Summer

On the morning of March 4th, I FaceTimed my sister. Or, more aptly, she FaceTimed me. Knowing me, if I didn’t reject the first call and text her “in the middle of something, I’ll call you back in a bit,” I probably audibly groaned and started walking upstairs to find Harley. See, when she was in the hospital, Lyss didn’t care to annoy me if she knew that she could see Harley for just a second. She’d obviously ask me what I was doing or what Duncan was doing afterwards, but I could never be mad at her for wanting to see Harley, even if I made a bigger deal about being inconvenienced than I should have. Since I can remember, Bo bear, then Coco, then Duncan, and finally Harley have been members of our nuclear family. The dogs were always more family members than pets, so we’ve always loved them like so, with all of us probably being more excited to see our dogs when we got home than each other (I think most people adore the full-body wag of an excited dog more than the excitement any human can show).

I didn’t know it then, but that would be the last fully coherent conversation I would have with my sister. Later that night, things turned for the worst and I received a call late from my dad hinting I should either come down then or in the morning. As it turned out, Alyssa would end up being in what was effectively a comfort coma for the following eight days until she quietly and peacefully took her final breaths as we surrounded her. Those eight days were hectic, vacillating from me wanting to return to a life of normalcy and routine and Alyssa finally being at peace, to a state of what felt like lucid dreaming, knowing that my life was torturously moving rapidly – achingly – towards a world where my sister would no longer be with us. During these days, I tried to display what I regard as the most special qualities of both my parents, with the ultimate goal to be the support they both needed, while also balancing the understanding from the special relationship I have with my sister to provide them with a sense of comfort in knowing this was the best we could hope for after the traumatic life Lyss experienced. 

Recently, that final conversation I had with Lyss and the letter she left, have weighed on my heart heavily. Her birthday falling a few weeks after the six month mark with the first day of fall happening in between felt poetic. My sister shined during every season – her clothes in the fall and winter were certainly on point – but summer was a LaRosa tradition. It was the season we spent the most time together, even if that time was spent around a pool. This was typically characterized by me, Lyss, and my mom being envious of the tan my dad always seemed to keep the best. Lyss died a couple of months before summer started. I intentionally didn’t write about experiencing an entire summer without Alyssa’s pictures and videos around the pool, or of her putting bathing suits on Harley, or her tagging her pictures at the “LaRosa Grand” as she named it. I wanted to wait until this month to use this season without Lyss to reflect.

I knew Alyssa didn’t have much time the day we FaceTimed. I thought maybe she had a couple of more months, but I have to be honest: as much as I desperately hoped she would, I did not expect her to make it until her thirtieth birthday. Thirtieth birthdays seem to hold a disproportionate amount of importance in the CF community. Even though the life expectancy for people born with CF is in the forties now, I’d surmise that the turn of a decade is a bigger milestone than 29 or 31, so that feeling of hitting 30, of almost reaching what most people consider middle-age is an important milestone for us adults with CF. Lyss had expressed on a couple of occasions, particularly in her final months, that her thirtieth birthday and our cousin Jenn’s wedding in October – as a matter of fact, a couple of weeks before she died, she ordered her bridesmaid’s dress for the wedding – were the future events she was most looking forward to.

Thursday, September 27th is Alyssa’s thirtieth birthday. It will also be six months and 23 days since our last conversation and six months and 15 days since her death. A few days later, September 30th, is my dad’s birthday. I expect these upcoming couple of months to be increasingly difficult. Thanksgiving and Christmas are going to remind me and my parents of how much we’re missing without my sister. My mom and Alyssa were the best Christmas-ers of all time; they were the best gift-givers and they adored it. They excelled during this time of year. I’m heartbroken for my mom because I know how hard this will be for her. Once Christmastime is over, this is the time of year I struggle the most. The winter months are particularly hard for me, as this is when my depression is at its worst. I’m trying to take that into account now so I can plan to try to prevent my usual slump. 

Writing during these turbulent last six months has been valuable for me in more ways than one. Writing through the grief has made me realize that I will always have more lessons to learn. When I go back and read my piece marking one month, I wrote almost confidently in my grip on my grieving process. It’s funny to read that now because I wonder who that person was because I sometimes feel more lost than ever now. Then a day or two later, I find myself laughing and looking forward to the future, wondering how I could not feel like life is worth living, recognizing that during those final minutes with my sister, I wouldn’t have believed being capable of laughing without her around. But this is both the grieving process and life at large; progress is not linear. Through everything, there will be good days and bad days. I’ve written a lot about this, even before Alyssa died, even before my own struggles with depression. What this confirms to me is that I know that even with everything I’ve been through, I’ve developed grit. I am proud of my willingness to admit that I feel emotionally broken and lost sometimes and that I openly share that through platforms like Facebook, Twitter, and writing on my blog or new column. 

I’ve always been reflective and introspective. Before I even knew I wanted to be a writer, I would evaluate, re-evaluate, reflect, and spend time thinking about my actions, my beliefs, and the world around me. I have a fear of being self-righteous and if I’m a good enough person which probably implies that, at my core, I’m neither self-righteous nor a bad person. Reflecting and introspection lends itself to good fodder for writing, but also a potent fuel for depression, anxiety, and guilt. I’ve spent a lot of time wondering if I was a good brother to my sister, while being simultaneously aware of how much I loved Alyssa and, by all accounts, how much she loved me and was aware of how I felt. Writing through these feelings provides a blanket of comfort more often than not, mostly because honesty in my writing is one of my core values, so when I write this and publish it, I feel I’m more honest than ever. 

I’ve learned quite a bit about myself, about what I want to do with my life, and processing grief in the last half a year. One of the most important parts of coping with grief that I’ve learned is the importance in finding how to navigate that line of moving forward versus moving on. I feel like moving forward is the path you walk when you recognize that person is gone, but that you’ve found a way to walk that path with them in spirit. Moving on implies to me more of a sense of forgetting or abandonment. Finding whatever you need that allows you to cope and grieve in a healthy way is the critical part of all this.

When Alyssa died, I know she was proud of me. In the six and a half months since she died, I know she would be even prouder of me. I know she would be excited about my new writing column and a lot of other things happening behind the scenes that I’m working on. Truthfully, realizing that what I’m going through is something that not many people can understand that well has been crucial in my efforts to pursue some projects that I deeply believe in. Something I’ve learned lately: there will be people that may doubt what you’re doing or question your motives, but the people that do matter will support you in whatever way they can. That’s not really that profound of advice, but it feels profound when you start living by that mindset. 

So Lyss, to celebrate your thirtieth birthday, I am making a promise to you that I will make that project we talked about a reality and I assure you you’ll be proud. I promise I will continue living for you and taking care of mom, dad, and Harley. Thank you for being the sister you were for so many years and supporting me in everything. I hope you’re resting peacefully. You deserve it more than anybody I know. Do me a favor and tease Bo bear and Coco for me a bit. I’ll see you eventually, but not soon.

TL

Depression, Anxiety, & Finding a Way to Cope; A Note on Mac Miller & My Personal Reflections

TW: This post deals with suicide, anxiety, death, and drug abuse. I try to talk carefully about it, but I reserve the ability to speak callously about some of my personal struggles, since I feel that better represents how these struggles truly feel.

There is something intoxicating about baring it all through some form of art, whether that’s music, or writing, or whatever suits you as a creative outlet. It’s different than expressing your emotions to others in conversation or text messages. When I write about my suicidal ideation, anxiety, or depression, I don’t have to talk carefully; I don’t have to worry about the awkwardness that comes with waiting for the other person’s concerned response; I don’t have to feel as though I’m putting somebody in an uncomfortable situation. Writing provides me an outlet to be nakedly emotional and it provides a healthy outlet to do so. But the twist is that writing has turned every experience into an opportunity for artistic fodder; I seek out reasons to write and my experiences continue to provide those reasons. This type of artistic expression means I’m constantly evaluating myself and my life and those around me, for better or for worse.

It’s funny because I can write a piece documenting my experiences with life and depression and anxiety and feel better because of it in the moments afterward. Hearing from others that my pieces have resonated with them sustains me to some degree as well. But baring my emotions so openly puts me in a precarious position: I put this pressure on myself to live up to my writings, to always be open and positive, to persevere, to constantly seek out what “cures” my depression. I obsess over feeling fulfilled and I’m constantly chasing that serotonin dump that comes when somebody compliments my writing or I achieve some task that makes me proud. In many ways, it has become addicting – and I’m young in my writing career. The result of this precarious position is what amounts to three different states of Tré. 

The first is how I feel when I’m writing or in the moments after I publish a piece; in this state, I feel fulfilled, almost ecstatic, it’s a “flow-state” where I don’t feel like I’m writing but rather the words are falling out of my brain, like a puzzle. It feels like my fingertips know what to type before I even process the thought in my brain. Time moves inconspicuously, and honestly, I don’t care how much time has passed in this state. This state is when I feel like no possible tragedy could convince me that life isn’t worth living, depression and anxiety are nonexistent in my mind, and the hellscape of the world doesn’t seem that scary, and it actually seems beatable. The problem is: this state is what I’m constantly searching for in everything I’m doing. The second I leave this state, I can’t remember what it feels like to be in it until I stumble my way back into it. This is why it’s so addicting: the high only exists when I experience it and I can only appreciate it when I’m missing it.

The second state I experience is one of hopelessness. My depression isn’t one where I want to lay in bed all day and not do anything. I don’t necessarily feel listless, but rather the opposite of my flow-state mindset. I feel hopeless that I will ever feel the way I feel in that flow-state again, and worse yet, that since the flow-state is so transient and hard to reach, it’s not worth seeking out. What’s the point of those moments of ecstasy if I can’t control when they come? Or is that precisely why those moments are so worth seeking out, because we can’t control them? It’s hard to say, but the important thing to note is that this feeling of hopelessness is what batters my brain and prevents me from progressing. I feel like if I’m not in a flow-state, I’m not doing anything worthy in my life; I’m not progressing, I’m not happy, I’m not fulfilled, and why would I want to continue my existence if the vast majority of my life is not in these rare moments of ecstasy?

Which leads me to the third state. Let me make this clear: I do not struggle with substance abuse and I’m certainly not addicted to any substance, but I can admit (and will explain) why my relationship with alcohol may not be all that healthy. The third state I experience is one where it’s coated with some superficial feeling of contentedness. (This could probably be a different post entirely, but how do we define and rate feelings of contentedness or fulfillment? Is a feeling of contentedness that’s produced from writing or making music all that much different than the feeling from a buzz from alcohol? It’s mostly just a burst of serotonin anyway. This is not an endorsement of abusing drugs, I’m just making a point.) The psychoactive drugs I consistently consume are all legal: caffeine, I’m prescribed Xanax, which is a benzodiaprene, for anxiety, and alcohol. (I’m a firm proponent of legalizing recreational and medical marijuana for the record, but that’s not a part of this post.) Coupled with socializing, alcohol presents itself as the perfect solution for this feeling of hopelessness. It somehow feels like I’m being productive in some way, even if that way is enjoying the company of people I dearly love – and I suppose that counts for something. The buzz that alcohol provides intensifies this feeling of living in the moment and, if used appropriately, that’s totally fine in my opinion. What becomes an issue is when alcohol is a prerequisite for enjoyable socializing, which, in my life, it has become that way. Most 20-somethings socialize in this way and I know I’m in the norm. I don’t resent that, necessarily, but I resent the fact that this is a state of life I live in or think about a lot. My weekends, 2/7 of my week, are surrounded by my weeks instead of the other way around. I think it’s because I’m such a social person and my existence is formed by self-reflection, socializing, and fulfillment. Socializing suits that, because it also triggers the serotonin dump that we all crave. With alcohol, it’s a damn good cocktail at providing a nice relief from that hopelessness. If I can feel similarly by writing or by social drinking, why would I choose the one that stresses me out as opposed to the one where I’m actively creating memories? This sounds like an indictment of writing, when the reality is that writing is what keeps me sane in many ways and social drinking drives a lot of my self-loathing in ways that are hard to explain. This is where I want to talk a bit about Mac Miller.

Mac Miller had been in the spotlight for his entire adulthood. He was a human in the same way we all are. But he was also an artist. I don’t want to pretend that I can authoritatively speak on his mind, but we can listen to his lyrics and see his struggles. He bore it all in his music, much like I do in my writings. Over the last decade, he created music that you can hear blaring in the background of college parties around the country. Yet he also created deep, introspective, reflective, and dark meditations on his soul and his existence. He was not shy about his substance abuse and the way he used it to coat his internal struggles. We look at artists and wonder how they could struggle with any sort of depression and anxiety when they’re wealthy and famous. We admire and respect artists for being capable of reaching into our soul and finding the words that we want to say but don’t know how, in a way that feels like they know us better than we know ourselves. They become a part of our existence. We love them and we care about them. At the same time, we deify them. Even though their success is often predicated on finding a way to express their emotions in a way that resonates with us and simultaneously fulfills them, we expect them to transcend the very thing that keeps them creating. We ask them to stop being the human they need to be to create. I value art so much because I believe it the expression of our soul. I think everybody is capable of creating some art, and I think we’re all naturally skilled in expressing it in some way. I also believe that we can all nurture the skills and become masterful at any type of art with the right amount of effort.

I don’t mean to be opportunistic in writing about Mac Miller’s death. It is tragic, not only because he was an artist that positively affected millions of lives, but because he was a 26-year-old human struggling and his life was cut far too short by substance abuse. Substance abuse permeates every part of American life and it cuts us all the same way. It’s likely we all have somebody we love that is struggling with something, whether it’s substance abuse, addiction, depression, anxiety, or anything. It’s possible that being a shoulder to cry on or somebody they can talk to could save their life. We must not stigmatize those that struggle. We absolutely must be compassionate, loving, and understanding. There are times we might not be able to be that person for them, but maybe we can at least help them find the appropriate help. Every life is fundamentally valuable and every day of our lives could very well be our last, whether that’s incidental death, death by chronic disease, an overdose, or by suicide. I have wondered about my own life so much. Though the thoughts are more rare, I still frequently have intrusive thoughts of suicide. It’s scary and it’s hard to understand. I know I’m loved and I know how many people would be heartbroken if I lost the battle to depression. Finding a healthy balance of my three states is what will help me in my battle. I feel like I’m winning most days, but on those days when I feel hopeless, receiving a simple text or compliment has been genuinely life-changing in the moment.

From listening to his music, and I want to be careful with speculating, it seems like Mac tried to juggle his artistic pursuits with the allure of substance abuse to escape the doldrums of everyday life. I hate that it seems like substance abuse won. I can relate to that feeling of trying to feel fulfilled, while also obsessing over the many parts of life, and how balancing them can be overwhelming. 

(Mac Miller’s death is sad for another reason. Bullies on the internet have found their way to blaming Ariana Grande for his death, claiming that breaking up with him sent him over the edge which eventually lead to his death. That is infuriating and baseless. It is beyond unfair to blame her for his struggles. It was never her sole responsibility to help him find the solace he needed to not abuse drugs. Again, Mac Miller is a victim, but Ariana Grande is not the culprit. She was supportive when they were together and even afterwards. Please remember Mac Miller was his own person and he was vocal about his struggles. It is sad he lost the battle, but we need to respect that Ariana Grande had nothing to do with it. We need to realize she cared for and loved Mac Miller so she is also probably heartbroken and needing to grieve too.)

I think what I’m trying to say with all of this is that, by all accounts, Mac Miller seemed to be a good dude who had some struggles. I’m saddened by his death because his music paralleled my life in a lot of ways that I’m only realizing after his death. I’ve partied to his music, but I’ve also solemnly driven around listening to his raps about the value of life and finding a way to be happy when we don’t feel like we can be. I’m constantly trying to find ways to be happy and sometimes those ways seem to set me on different paths: writing is a personal endeavor that I always do alone (or next to Duncan) and provides fulfillment in a much different way than socializing and “living in the moment” drinking does. Writing requires me to reflect, internalize, and learn for the future. Socializing is about the most “living in the present” we can be. 

I hope my words live on after my death like Mac Miller’s will. In the days after an icon like Mac Miller’s death, especially in the way he died, there are always tributes and reflections about how we need to appreciate our time and listen to those around us for subtle cues that they may be struggling. It’s easy for us to be cognizant during this time and it’s easy for us to realize how much we love our friends and family. But we must learn to internalize these lessons so the next time your friend makes an offhand comment or joke, maybe it’s more than that. Maybe it’s a cry for help. I can admit I’ve found myself doing this on more than one occasion. 

To get a good grasp of who he was as a person, I think this is a superb piece: The Perfectionist.

To finish, a live performance of one of my favorite of Mac’s introspective songs:

Rest in peace, Mac. Your music and your words affected so many lives. 

TL

Am I A Good Person? Guilt & Self-Doubt While Grieving

A very real part of my experiences with anxiety, depression, and grief is the self-doubt. Whenever I become anxious about something, whether it’s about an upcoming CF appointment, something work-related, or even if it’s something as minor as my plans for the afternoon, my mind runs through countless possibilities; the good and bad, the likely and unlikely possibilities. For whatever reason, I have convinced myself it’s better to be aware of the unlikely and scary possibilities because then at least I can try to be prepared. A truer result is that, instead of being prepared, I become anxious. I assume, no matter the likelihood, the bad possibility is the fate I’m confined to. 

Now, extrapolate this feeling of worry and fear to other aspects of life, such as self-esteem. One of my goals for myself on a daily basis is to try to do the right thing as often as possible. I understand that there will be times I will disappoint myself and I will disappoint others, but disappointment is so painful. The idea of disappointing others and myself scares me. Disappointment is a painful emotion and being disappointed with others is something I don’t enjoy, though I try my best to be understanding and compassionate when someone feels as though they have disappointed me. I try to use this same compassion when I disappoint myself, but then the pendulum swings too far in the other direction and I feel like I’m giving myself too much of the benefit of the doubt and not being harsh enough on myself.

I’m writing all of this with the knowledge that most of these feelings are irrational or at least somewhat pointless. What is the correct moral code, anyway? I don’t know if there is a universal moral code, but I do believe that treating each and every person with compassion is of the utmost importance. Admittedly, I disappoint myself in this way sometimes. I have to reconcile my compassion with my disdain for people that abuse their positions of power. How do I reconcile this worldview of treating others with compassion when I have such a vitriolic opinion of politicians like Donald Trump and Mike Pence? Well, my rationalization of this is that Donald Trump and Mike Pence and others are immensely powerful people in positions where they have the power to do right by others, but instead abuse that power to enrich themselves, and push false, damaging, and prejudiced narratives. My disdain for them is founded in my belief that we need to make this world a better place for all of its occupants, so my compassion for the people that have been abused by powerful people is the basis of my ill feelings. I can get a little too passionate at times, but again, my moral code calls me to use my position of privilege to ensure that people that need to be held accountable are held accountable for their actions.

I never want to pretend to be a hero because I’m certainly not. If you’ve ever caught me in a deep conversation, I’m full of self-doubt and self-loathing. I never want to be self-righteous and when I’m worked up, I am aware that at times it can come off that way. I’m trying to be better about that. I don’t believe my moral code is perfect by any means, and I’m always actively trying to better myself.

When I try to figure out what I think the basis of this self-loathing and questioning I’m a good person, I think it’s due to a lot of guilt I feel regarding Alyssa’s last few years. We were obviously very close as siblings, but we had a strange relationship at times. Our approach to our health was different in a lot of ways. I’m obsessively compliant and adherent, I work out 6-7 times a week, I constantly research to figure out ways I can experiment to improve my health, I’m definitely more independent. Alyssa wasn’t that, so there were times I had to push and prod her to help her better understand why she had to do what she had to do. This meant we fought sometimes. Sometimes the arguments would be worse than they should have because we were both passionate and emotional people. I think I’d get upset because I wanted her to be as healthy as possible and I never wanted to lose her; I think she’d feel like she was disappointing me or felt like I was getting on her for reasons out of her control. I tried to understand. Looking back, most of her health issues were probably out of her control. I didn’t have that epiphany when she was alive, so I never got to tell her I was sorry for being a little too tough. I don’t think she resented me for those arguments, and I think she always knew it was because I worried about her so much and I cared as much as I did, but the fact that I will live the rest of my days without being able to apologize for that will continue to haunt me. This guilt burns me so bad because I know I should’ve realized this sooner. I know I shouldn’t have been as hard as I was on her. I know I should’ve appreciated the time I had with her more. 

I lived for years knowing I’d watch my sister decline. Knowing that affected how I approached our relationship. I think I held Alyssa a bit at a distance because I didn’t want to come to terms with knowing she wouldn’t be there forever. I convinced myself that if I didn’t start treating our time together as if it would be limited, that the time wasn’t limited, that she would be there forever and we’d be able to fight like siblings forever. I held my sister at a distance until she was gone and it’s too late to ever change that. I’m only now realizing how much these thoughts over the last five and a half years have fucked up my mind. I lived my life knowing my sister would die before me, from the same disease that could very well kill me, and I still didn’t swallow my pride or pain and treat our time together as the most valuable thing in the world. I worried about school or girls or going out and drinking instead of spending time with her and letting her know much I admired her or how much she inspired me and the world around her. Of course I wrote pieces about her and constantly talked about her glowingly; I even obsessively researched medications and treatments to ensure she was getting the best option available, and so I could educate her and my family about what was happening. But I know I could’ve been and should’ve been better. She was my best friend and my big sister and one of my biggest supporters. 

I know I can’t hold this over my own head forever. I have to forgive myself the same way I’d hope Alyssa would forgive herself if the roles were reversed. I’m sure she had some regrets in her final days about our relationship. I wish it was easier to simply forgive myself, but that isn’t the case here. My sister is gone and not being able to explain myself to her means I will have to slowly and surely learn to love myself and forgive myself. It is up to me to find out the best way to do that. This is exactly why I write, to hopefully spread messages about lessons I’ve learned, to communicate stories of my experiences that can potentially inspire people to do some self-reflection and soul-searching. 

I want to make sure I always do right by those I’ve wronged, including myself. This piece is a step to reconcile those emotions. I hope I haven’t harmed anybody, though I’m sure I’ve disappointed people. If I have harmed you, know that I’m truly sorry and I don’t believe I did so on purpose. I hope you can forgive me and I hope I can forgive myself.

I feel a lot of guilt that I got to have such a normal life compared to my sister. I moved out, went to college, started a career, all while she struggled every single day. I think she was proud of me but still, I think she envied me. It still breaks my heart whenever I think about the things she missed out on. I know that hurt her so much.

Reflecting on all of this guilt I’ve felt has helped a lot. It’s made me realize that getting through this will take a lot of self-reflection and self-care. No matter what people think of my intentions or who I am as a person, I’m going to have to believe I am who I try my hardest to be: a compassionate, understanding, decent person. I believe that, no matter what happened when times were difficult, Alyssa knew who I was in my heart and that the reason I was hard on her was because I loved her and wanted the best for her. Tearing myself apart for something I can’t change won’t make me act better in the future. I can only use this as an opportunity to reflect on how I wish I would’ve acted and decide for myself that, from here on out, I will take a step back and ensure I’m compassionate towards those in my life. I know Alyssa would want me to appreciate every day, just as I think she did.

TL

I am not my anxiety

A Letter regarding my anxiety

I’m well aware that a lot of the pieces I write that are personal narrative or essays are advice pieces at their core. I don’t write these with the intention of appearing that I am qualified to give any sort of advice and I certainly don’t have the amount of control that it probably appears that I have when I write these pieces. I don’t believe that I’m necessarily any more qualified to write the pieces that I am; I think what separates me from others that are going through similar experiences is that writing is my primary coping mechanism. I believe that everybody should try to write daily, but that doesn’t necessarily mean that I believe everybody should have a blog (of course anybody that wants to start one should!). Daily journaling is shown to improve mental health and emotional intelligence.

Something that’s generally hard for people that have never experienced anxiety to understand is that most our anxieties appear to be easily solvable and nothing to worry about. We are aware of this! We’re aware of how they are seemingly simple, and that only exacerbates our anxiety. I become anxious about a problem, then I get anxious about why I haven’t solved it, then I get even more anxious when I realize it’s clear that I’m struggling with this and people notice that. This is why anxiety and depression go hand in hand. All of these anxieties compound to make me loathe myself, which only makes my depression harder to deal with. Then I have to fight with the lingering thoughts that this is all my fault, which guess what, only makes both of these issues even harder. 

Writing helps me to reason through the emotions I’m feeling. When I start to write my thoughts on paper, I realize that I’m doing better than my anxious thoughts want me to believe. I realize that I’m actually thinking pretty lucidly about my problems and that things will get better. Writing promotes clearer thoughts and it helps to mitigate some of that dreadful self-loathing. 

I want to make it clear: writing doesn’t solve anxiety or depression or make everything better all of the time, but it’s certainly a powerful tool to have in the arsenal to utilize. It’s something concrete to come back to and it has the power to remind us of what it feels like when we’re thinking a bit clearer. I struggle daily with a physical disease in cystic fibrosis and I struggle daily with mental diseases in anxiety and depression. When I speak about cystic fibrosis, I’m never really challenged. People generally believe me and sympathize with me. It’s completely different when I speak on depression or anxiety. The only people that can empathize – and frankly, sympathize at all – are those that have experienced something similar. Explaining cystic fibrosis makes sense: I have thick mucus in my organs which causes a bunch of problems. Explaining anxiety is much harder: my thoughts are constantly convincing me that I’m not good enough or that I won’t work through these seemingly simple problems, to the point where it genuinely feels like I won’t ever feel mentally normal again. Unless you’ve experienced that, it doesn’t make any sense. 

Mental diseases like anxiety and depression are often comorbid with physical diseases like cystic fibrosis. I’ve always been a worrier; it wasn’t until recent years that my anxiety started to interfere with my daily life. Even through college, I would’ve never been diagnosed with general anxiety. Being diagnosed with anxiety and depression as well as having CF presents another interesting invisible issue. With CF, I have some (limited but existent) level of control over my disease. I can exercise more, improve my adherence, or try other medications. All of these can possibly improve short and long-term outcomes. With anxiety and depression, your outcomes feel inherently out of your control. Speaking for myself, one of the first steps to improving my situation has been admitting it exists. This may be different for everybody, but speaking out about this took a lot of courage and self-reflection and way too much time was spent denying I was struggling to the point of needing help. Over the years, I’ve learned how to write about CF in a way that (at least in my opinion) doesn’t solicit pity. Writing about how anxious and depressed I am requires a different approach. Our culture seriously stigmatizes invisible and mental diseases alike, so writing about it required me to ignore the fact that some people may not “believe” in it, because their opinions are useless and quite honestly harmful to me and the broader community. I never want pity; I want compassion, sympathy, empathy, and kindness. Once I admitted to myself that what I was feeling was something outside of my control and therefore needed to be solved through solutions I had never tried before, I was on a path to much better mental health.

After admitting it to myself, I forgave myself. It probably sounds weird to say that I forgave myself for this, especially when it was clearly out of my control. For me, though, it was a necessary step. I had to learn to accept that this was something that I couldn’t control and in order to reduce the amount of self-loathing I was having because of this thing that I couldn’t control, I had to remember that it wasn’t my fault. I had to give myself the same advice I’d give to a struggling friend. I realized the language I was using with myself was that of somebody that was starting to resent themselves. If I ever heard a friend speak like that, and I have before, I would try my best to help them see that it was not their fault at all. This is where depression and anxiety are so paralyzingly difficult; no matter what people say, yourself included, it feels despairingly impossible to ever see it that way. Through all of this, I have struggled with whether or not I am a good person. I feel like my heart is in the right place a lot of the time and I do my best to treat others with the compassion that I would hope others treat me, but there are always lingering, intrusive thoughts in the back of my mind. 

At times I feel like it’s one step forward, two steps back. This is where the step of forgiving myself was so important. It helped me start giving myself credit for the progress I made. If you read my writings, you can tell through all of this grief, there are times I bounce back and forth rapidly about what I’m feeling. I still have a lot of progress to make. I think this piece is a big step for me.

Anxiety and depression are no joke. Please reach out to me (I am obviously not qualified to give advice, but maybe I can be a friend), or a trained professional, or whomever you need to get the right treatment. It saved my life.

TL