#cogans

In September of 2013, almost five years ago, I sat crying in my admission counselor’s office and decided to defer my education at Kalamazoo College. I had just gone deaf. I promised Suzanne, my admission counselor, that I would be back, and that she would see me graduate, and that it would all be worth it. Somewhere in the universe was my (then healthy) friend Olivia (who I hadn’t met yet), and she was embarking on a gap year adventure of her own, traveling the world. We didn’t know each other, then. Maybe in another universe we would have met sooner—maybe Olivia didn’t take a gap year, and maybe I didn’t go deaf, and maybe we both went on Land Sea (a wilderness orientation for incoming freshmen) in 2013 and became best friends. And maybe in another universe we both intentionally took a gap year and went on global adventures before starting college. And today in that other universe, on June 17, 2018, we are both graduating from Kalamazoo College. 

In case you’re reading this and don’t know anything about me and Olivia, neither of us are graduating from Kalamazoo College, today—at least, not in this universe. And I think, for both of us, on some level, this feels like some sort of failure. Olivia was diagnosed with Acute myeloid leukemia (AML) while on a backpacking trip in the summer of 2015. She had to put her education on hold. You can read more about her story, here: http://livfor.life/. My story is published on this blog, but I stopped writing at some point, and avoided updating people on my very personal reality. To summarize, I spontaneously left K in the summer of 2016, for reasons that I have trouble articulating. I tell people that I wanted to try art school, but looking back I think that was a decision I made after deciding to leave K. The reality was that I was becoming sicker—fall quarter of 2015 was rough, winter 2015 involved several experimental immunotherapy treatments, and spring 2016 felt like a sprint to some sort of imaginary finish line. I had one advisor tell me that I had virtually no chance of being successful in academia if I continued to miss school. It crushed me. My education was everything to me, but I couldn’t keep up the way I wanted to, and it made me feel as if I were failing. I have no doubt that leaving K was necessary. In the fall of 2016 I caught pneumonia, and between then and now I’ve coped with various infections and maladies that have made it incredibly difficult to be a student. I’m barreling through college, taking a semester at a time, and sometimes experiencing setbacks that never cease to humble me.  

Why am I now writing about all of this? Well, Olivia is back. I met Olivia in my Intro to Sociology and Anthropology course, and we bonded over our love for the outdoors. We had similar Osprey backpacks and similar bubbling personalities, and we connected. Our friendship evolved in the summer of 2016 when we found ourselves in hospital beds on opposite sides of the country—she in California, and I in Michigan. She was undergoing treatment for her cancer, and I was treating a minor case of Bell’s Palsy. It was 3:00 AM my time, and we texted for hours. We bonded over our mutual frustration with our bodies, and we discussed things larger than ourselves. It was beautiful. Our diseases are so different, but our experiences are not so different. We both felt nostalgia for the lives that might have been. We wondered (although not out loud) what those lives would have been like, if we would have been happier, etc. There’s a special kind of loneliness in being twenty-one years old, and being awake in a dark hospital room in the middle of the night. Talking to Olivia made it infinitely less lonely. My nurse came in to check on me, and he saw how happy I was. I could only smile with one side of my face, but my eyes lit up, and I felt a level of peace that somehow feels like a genuine gift from God.

  So, Olivia is here. It is my first time seeing her since she left K in 2015, and she came back for our class’s graduation. We woke up at 7:00 AM and went on a breakfast adventure. We had a super-soul conversation, which lasted several hours. We are both physically weak, though we’ve dealt with more physical stress than most people deal with in a lifetime. We compared pill boxes and medication side-effects, and we talked about our insecurities. Please understand, it’s almost impossible for sick people to have friends. Our friends are afraid of us, they are terrified of our lived experiences, and this makes it very difficult to have authentic relationships. Most people in their twenties do not want to talk about poop, or puss, or bones, or chemo, or health insurance, or living or dying. When two sick people come together, it’s a validation of our shared truths. We are both lonely, despite the fact that we are surrounded by people. We are scared. We are embarrassed. We feel shame for our bodies, and we feel vulnerable, even though we know that this is all beyond our control. It’s difficult, okay? And we rarely acknowledge how difficult it is. 

I don’t often talk about mental health, but I had a clinical nervous breakdown this past December. I was humiliated, and it felt like an out of body experience--pardon the cliche, but I snapped like a rubber band. However, the more I talked to people, the more I realized that I was fine—at least, that the emotional release I experienced was something that was valid, and very necessary. For people like me and Olivia, we are expected to be “inspirational.” We are beacons of light, and our positivity throughout increasingly dark experiences stirs something beautiful in others. Do you know how exhausting it is to be inspirational all the time? We are expected to take everything that comes, and to persevere with enthusiasm. People tell us we are strong, and damn right we are strong, but it isn’t like we have a choice. We endure, because we have no other option. You don’t see us raging at God, begging for mercy, crying, throwing up from pain. You don’t see our mothers worry about us, you don’t see them sacrificing everything for us, and you don’t see the toll our illnesses take on our families. Being sick is not glamorous. It’s ugly, and raw, and incredibly human. 

Both Olivia and I are the kind of people who believe in barreling through. We both immediately turned to blogging when our physical health began to spiral. We both put on tough faces, and insisted that we were fine. I asked Olivia why she felt like she needed to come to this graduation—I don’t want to be within a thousand miles of this graduation—and I think we both needed to sit and reflect, and try to cope with our present realities. There is a quote by Cheryl Strayed that I think is appropriate, here: “I'll never know, and neither will you, of the life you don't choose. We'll only know that whatever that sister life was, it was important and beautiful and not ours. It was the ghost ship that didn't carry us. There's nothing to do but salute it from the shore.” We sat in my air conditioned Subaru, looking out over the Kalamazoo skyline, and aptly saluted our sister lives. 

An interesting fact about Olivia and I is that even when sitting in a parked car, we both insist on keeping our seatbelts on. The physical trauma that our bodies have endured makes us feel perpetually unsafe. We talked about why this is. How could it be that our guts and souls felt so uneasy, even though our minds logically know that we are fine? I want to make a point about this, because this is what our lives are like on a good day. And this was a good day. This was my first time eating out since emergency surgery last Monday. Olivia flew across the country, and walked up several flights of stairs. This is as good as it gets. This is as close to “normal” as we get. And yet, we still feel uneasy. We still feel this dark cloud of danger and despair. It’s important to recognize that we don’t normally confront this cloud. No one wants us to confront this cloud. People want to hear about acute trauma, and tales of triumph—they don’t want to hear about the day-to-day lives of the chronically ill. And in so many ways, that invalidates our existence. The world goes on when we take our daily naps, and we feel as if we shouldn’t be napping, because we are twenty-three years old, and dammit, we should be doing stuff.  But we are doing stuff. Every day is a triumph for us. We get out of bed, and we take baby steps towards wellness.

When I first began this blog in 2012, I wanted it to be a tale of triumph and recovery. I wanted a beginning, middle, and end to my story. Now, in 2018, I realize that my disease isn’t something I can conquer and eradicate. No matter what happens, Olivia and I will always live with the threat of that dark cloud—we will always be at risk. In so many ways, this makes us angry. What is important is that we do not sit in this anger. We need to meet it, confront it, and give it a safe place in the back of our minds. Because without anger we wouldn’t have the capacity for compassion and forgiveness. We live in a world of people with complex stories, and we have nothing to gain from resenting those whose lives seem less troubled than ours. Today, we listen to our ex-classmates worry about the heat or the possibility of rain for graduation. To be honest, it feels exasperating. Healthy people are hard to be around, yes, but we cannot invalidate someone else’s genuine emotion. A quote from Brené Brown’s Rising Strong works well, here: 

“The opposite of scarcity is not abundance; the opposite of scarcity is simply enough. Empathy is not finite, and compassion is not a pizza with eight slices. When you practice empathy and compassion with someone, there is not less of these qualities to go around. There’s more. Love is the last thing we need to ration in this world. The refugee in Syria doesn’t benefit more if you conserve your kindness only for her and withhold it from your neighbor who’s going through a divorce. Yes, perspective is critical. But I’m a firm believer that complaining is okay as long as we piss and moan with a little perspective. Hurt is hurt, and every time we honor our own struggle and the struggles of others by responding with empathy and compassion, the healing that results affects all of us.”

I think, this is what it means to be triumphant. It does not matter that we are not walking across a stage, today. That life was not for us. It is a sister life, a ghost ship that we must wave to from the shore. 

On my way home from breakfast with Olivia, I listened to Oprah’s podcast where she interviews swimmer Diana Nyad, whose motto is “find a way.” I think this applies to not only us, but to all people. There is sublime beauty in endurance, in pushing our bodies past the realm of human possibility. For Diana Nyad, that meant swimming from Florida to Cuba. For Olivia and I, it means something different. Make no mistake, Oivia and I have stories of triumph, and so do you. They might not be the stories we wanted, but they are ours—singular and our own.