She's been gone for three years

My reflections on grief, death, and life

Today is the third anniversary of my sister’s death so I wrote about my reflections on grief, death, and life. Thanks so much for all your support, always. If you would like to view it in original format, click here.

It was after we confirmed with doctors there were no more treatments to try to reverse Alyssa’s chronic rejection that we decided to take a family vacation to LA. We hoped maybe we could escape reality for a week or so and create some memories as a family. We never explicitly discussed it but it was evident that this was going to be our final vacation. There were moments where things felt okay but the general feeling during the length of the trip was a haze of apathy and unspoken pain and sadness. Alyssa knew her life was drawing to a close. I knew she didn’t have more than a few months. She was miserable the entire time; just pissed off, upset, in agony. She was 29 years old and looking death in the face.

Grief, community, and life are not binaries. We cling to community because community provides us the comforts of love, validation, and support. There is no way through life or grief without community. Nobody has ever achieved anything in life without a little support from others.

I wish others knew that to grieve is to be a human capable of love. And while grief is sometimes difficult, grief teaches us so much about our capacity to love. Grief also makes us be the humans we are capable of being; it is through grief that we spend more energy thinking about what we miss about somebody instead of what we don’t miss. If we focused more on the parts of people that we like more than the parts that we don’t, we would all be happier, more compassionate, better people. Grief has taught me to consider death and what it means to me to live a good life. It’s through those two experiences that I’ve learned to love people for who they are and where they are, and to recognize how we could all be better though it all. 

There was an evening in LA when my mom and I went to pick up coffee. My mom asked me what I was thinking. I had no choice but to be totally honest: I think we need to prepare for our future without Alyssa very, very soon. I asked my mom to consider the potential futures that existed: Alyssa slowly becomes more miserable with every day, or she rapidly declines and ends her suffering sooner rather than later. There were no futures where Alyssa lived much longer. This hurts to write but it hurt a million times worse when I first realized it. I had to be honest with myself; there was nothing to be done and hoping for a miracle was only going to make the despair that much more worse. We could not cling to a miracle. It wouldn’t have been fair to us, and it wouldn’t have been fair to Alyssa. All that we could do was try to be our best selves for her final days.

The weeks after she died were weird. It seemed pointless to do the everyday tasks that didn’t make me happy but returning to the banality of life did help to alleviate some of the pain. It occurred to me, then more than ever, that so much of what we do with our lives is passing the time as we are headed toward some undetermined destination. It sounds callous and morbid but the truth it, from the moment we are born, we are headed toward death. We are better off acknowledging instead of pretending it’s not true.

I really just wish we could learn to appreciate people when they’re here. We shy so far away from death that we choose to pretend it doesn’t really exist. We assume there will always be another time to say what we want to others. Whether people believe that’s at the gates of Heaven or through prayer, we neglect to realize we will all utter final words to people throughout life.

We are better off not embracing the comfort of binaries; no success is 100% a success and no failure is 100% a failure. Time doesn't exist as segmented moments and neither does life; you achieved that success by learning from your prior successes and failures, and that failure you experienced has a direct thread to a subsequent success. When we think in binaries — "I failed at that so better to look forward instead of backward" — we absolve ourselves of the work that comes next: Looking inward and considering the bigger implications. Why did we fail? Hell, why did we succeed? 

Since Alyssa's death, I have experienced the worst suffering and best joy of my life. I have allowed myself to feel joy at times, probably more so than I ever did when she was alive. I have also learned that there is real value in being at peace in the current moment, and that maybe life is not about anything you create or produce but about the moments where you maximize yours and others' joy. I have learned that the vast majority of people simply want to feel loved, supported, and valued. My sister did not feel that way and I know that my parents and I don't always feel that way. Nobody I know constantly feels loved, supported, valued and you can often find people's insecurities by how they cope with feeling unloved, unsupported, and unvalued, and when we recognized bad behavior is often due to that, we can work to bring them along. Our compassion begets more compassion.

Emotions should be viewed in a 3-dimensional plane instead of a 2-dimensional grid. It's possible to feel joy while also feeling sadness; it's what bittersweetness is. We are better when we can articulate the complexities of these emotions. I think this is where I flourish as a writer; I have spent so much time in my brain that I memorized its folds, its architecture, and the way it's all perceived, and this is why I've learned how to communicate these feelings. And all language is merely a distillation of the human experience, thus all language, all writing, contains feelings and it's how we become better writers — better people — by learning how to write these feelings into words. 

I know everybody has lost somebody to death or heartbreak. We have all experienced grief. Grief is complicated, and it's not a singular concept; it is the terminal phase of heartbreak. And grief is compounding. Once you've lost a loved one, all grief is forevermore tinged with all those you lose as time moves on. There's a space where we can all occupy together; there is no one person who possesses a monopoly on grief. We bridge divides by finding our compassion. 

I didn’t start saving for retirement until about a year ago. There never really was a reason for me to save money for a future that didn’t seem very likely. The idea of saving money and limiting how I lived on an already tight budget to save money for an age two decades past my projected median life expectancy seemed irrational. It’s a strange feeling to consider your future and when you might die. It’s even stranger that I could look at statistics and the logical conclusion that the odds, even in the great and best-case scenarios, rarely ever fell positively for me living past 60 years old. Sure, medications could come out and perhaps even a life-changing medication or cure, but still, it was difficult for me to conceptualize a life past 35 or 40. 

I’ve thought a lot about death. I’m a naturally curious person who aspires to learn more always. That includes what life looks like after our death. There are a couple aspects to this life after death that I tend to think a lot about. I think about what happens to us after our death; do we go to heaven or hell or maybe purgatory? Do we simply cease to exist in the same way that we simply didn’t exist before our birth? What would heaven even look like? It’s supposedly utopia but if I still have people I love on Earth that’s not quite a utopia for me. What if we lived our lives according to a religion that ended up being the wrong one? Even though modern religions almost unanimously preach they are the correct path, I’ve always struggled to believe somebody in China or Africa or wherever else that died young could ever go anywhere but paradise. This very reason is why I believe there may be something greater, but that no modern religion is the one true one. Living a good life is more important than who you pray to. It’s hard for me to consider anything else and I refuse to live a life where my peers on this planet just trying to do their best are going anywhere other than where I’m going solely because they followed a different prophet. 

This religiosity, this idea that there’s always more time to communicate with our loved ones either at Heaven’s gates or through prayer, is hard for me to grasp. I worry it’s this idea that leads us to neglect to fully consider the time we are alive. The belief that Heaven, utopia, paradise, is ultimately awaiting us robs us of the paradise in the here and now; it robs us of the effort required to truly think about our lives and our loved ones. Even when I was a child, I had these questions. It was doubt, but not doubt in religion; it was doubt in being wrong. Would I be willing to be wrong about this and potentially miss out on living life? 

I’ve lived with survivor’s guilt for far too long. I didn’t have the intelligence or life experience to articulate it then but I can remember the suffocating guilt I felt when my sister was unable to cheer due to missing so much school while I was normal in just about every way. As I grew older with these weird emotions, there’s one night that really sticks out for me: I was at the movies with my buddies in late high school when Alyssa posted an update about her health on Facebook. It was one of the first times she publicly mentioned the extent of her sickness. She posted about how doctors were beginning to mention lung transplant. I read the status while sitting in the movie theater before the trailers. I went from a moment of joy in living my life with my friends to feeling like it wasn’t fair and that I didn’t deserve this health. It’s hard to explain the pain and paralysis you feel when there’s nothing you can possibly do to alleviate the suffering of somebody you love and look up to while you’re so healthy. I was angry, so fucking angry, that this was her life and there was nothing I could do about it. That night, I was finally emotionally mature enough to at least somewhat understand the feelings of survivor’s guilt. I don’t know that I’ve ever fully recovered. 

That survivor’s guilt was compounded by the excruciating guilt that I felt because I often thought about my sister, myself, and other loved ones dying. Death surrounds us in abstract ways; every single day we hear of a fatal car or plane crash, a murder, an unexpected heart attack. We hear of celebrities overdosing or dying by suicide, we say how shocking it is, maybe shed a tear or two, then we go back to our lives. And yet, we are expected to not really contemplate our deaths. I have wondered for a long time how the world would be affected if I died today. I wonder how friends, family, colleagues, people on social media would react if I was no longer here. I hope that I would be missed for the reasons I like most about myself. It’s wondering how people would eulogize me that helps me to figure out why I want to be alive. 

I consider how I would respond if others in my life died. I’m no stranger to grief but I’m still terrified of losing people. I’m not only terrified of people I care about dying. I also find myself nostalgic when huge change is occurring such as a move or job change. Change both terrifies and excites me; change is inherently uncomfortable and it’s in that discomfort where we grow and consider the bigger picture of what’s happening.

It was late last year that I finally discovered the concept that I’ve intimately known my entire life: memento mori. This is a stoic concept that encourages the person to contemplate their mortality. I felt guilty that I even thought about myself or others dying. It felt that I was giving up on life before even living. My eyes would well up with tears at a hypothetical situation I had conjured in my head. Once I learned about this ancient philosophical practice, I felt a sense of understanding, compassion, validation. 

The complexities of grief are not that much different from the complexities of life. These feelings I’ve had for a long time — a fixation on death as a means to learn how to live, relief that my sister is no longer suffering — are valid, acceptable emotions. I learned to accept these complex feelings as perfectly human and a way for me to be a better version of myself. These complex feelings of life have made me more fixated than ever on living the life that I need to live.

Joy in spite of suffering is a way to reclaim control of our lives. So often we limit our joy because we believe that we should not be feeling joy in this very moment due to some other, unrelated thing: Maybe we’re stressed at work, upset with a friend, not confident in ourselves. These feelings of sadness are compounded when one also has anxiety or depression. It’s the pursuit of joy that has given me a renewed sense of hope for life. I am here today, my sister is not; would she want me to be pursuing joy or would she want me wallowing in pain? 

When somebody you love dies, no matter their age, you find yourself grieving them as the person they were and the future you had envisioned with them. You are grieving those memories you had hoped to create. You are grieving the life you thought you would experience with them. Our lives emanate far outward of who we are alone; we live on in the ways we impact every person we ever interact with. That means that when we die, we may die, but we aren’t gone forever, at least not yet. People will come back to our photos, our text messages, our writings, our memories. We will continue to live on in so many ways. 

I’ve always just wanted to live. I don’t want to live a life predicated on making money or achievements; I want to live a life where I experience relationships and love and joy and the pursuit of adventure and a better world. When I think back to my sister’s life, that’s what makes me saddest. For thirty years, she struggled with feeling loved, supported, validated, joyful. Her life was so dependent on the whims of her health that it was hard for her to remove herself from that. I also grieve the life I wish she could’ve had. 

If my writing has ever meant something to you, I ask that you do me a favor. I ask that you think about your life, your hobbies, your work, your passions, your relationships, how you spent your time. I ask not that you change it dependent on anybody else necessarily, but I ask that you think about it. Really think about it. Is there anything in this life you’ve wanted to pursue but you were scared to fail or you were scared you’d be judged? Do you hesitate to tell others you love them or that you’re proud of them for whatever reason? Do you find yourself harboring anger and resentment? I ask that you think about those things and take the time to do what really brings you joy. You deserve joy.

Recently, there was a viral quote from the tv show WandaVision. I’ve not watched the show but the quote is a beautiful distillation of what it means to lose somebody. 

What is grief, if not love persevering?

That quote, the practice of memento mori, and the film Coco all convey this message of how we live on after death. Even if there’s nothing after we die, there is still life after death. We live on in everything we put out into the universe, both good and bad: our compassion, our laughs, our memories, our writings, our social media presence, our empathy, our resentments, our frustrations, our criticisms, our rude comments, our actions. We don’t always have a choice over our circumstances, but we do have a choice in how we live.

My sister was inspiring in so many ways, but she was a flawed human. We are all flawed. There is no benefit in lying about who we are or where we can improve. We so easily see the faults in others that we neglect to realize this is how they perceive us, too. When they see us as our failings instead of our best characteristics, we are losing sight of this life and existence. When those we love die, we don’t fixate on their failings; we reminisce on our favorite things about them. Sometimes, our favorite parts of them in death were the very things that frustrated us about them in life.

If there’s anything I’ve learned through grief, it’s that I need to be gentle on myself and others. I need to live a life that I am proud of, and I need to do the things I want to do that will bring me joy. We are all grieving; we’re just in different phases. There will come a time when you need somebody else’s kindness; it’s up to you to provide the kindness somebody else needs in the moment. You may regret not saying what you need to say to somebody before it's too late, but you will never regret letting somebody know you love them and are proud of them. You will never regret being there for somebody.

She’s been gone for three years, but I’ve never felt such a deep sense of being alive. If there's anything I've learned in the last three years, it's that there isn't much more to life than finding what brings you joy. Thinking about those I've lost along the way and the distant future when I one day die has helped me to find that out.

I miss you, Lyss. I know you'd be proud of us.