Life in the After

Ten years ago, I almost died. On November 20, 2011 I was admitted to Massachusetts General Hospital where I would stay until December 31. I don’t really remember that day but I have heard parts of it from my family and I have the fragments of information in my hospital records — complicated course, cardioversion, septic shock, respiratory failure. I have the 5 large surgical scars, the tracheotomy scar, the countless markers of chest tubes and gastronomy tubes and PICC lines. It all worked- I’m still here. I was off the ventilator by January, strong enough to walk by February, eating normal food by March. But some pieces never came back. Some of that is physical — my lungs will always be restricted, my swallow muscles always weaker than they were, my voice less strong. But more of it is me. Or rather, her. The girl that got sick. She was 21 and she had no idea that she could die, not really. It’s probably good that she, that I, never really remembered that day because she would have been so scared. She was scared, later. I’m still scared. This year has not helped that. The stories of ventilators and intubation all over social media feeds, all the pictures of people who might now have scars like mine.

My most visible scar is at the base of my neck and only a few have asked about it– sometimes children, but almost always people who think it looks like a scar they have or that they’ve seen on someone they love. It’s just now occurring to me that maybe, in the future, more people will ask me about my scar because they’ve seen one like it. I think that might be nice, though I can’t promise I won’t cry. I don’t mind crying about this but I know it can make people uncomfortable. Sometimes, it’s just too much to hold (and I’ve never been great at holding back emotion). Some people really can’t handle that. Some handle it better — find those people, if you can. The ones who don’t get scared, the ones who can sit with you through it as you feel however you feel. It will be so different for everyone and so will your people — mine are right for me, yours are right for you and I hope more than anything that you have them, find them, keep them. I am beyond lucky to have a lot of those people and I have needed them. Especially this year. Especially thinking of people scared and alone and not able to breathe, like I was. Except I was never actually alone — my family never left my side and the hospital let one of them stay over me every night. But I didn’t know that when I was sedated. I thought I was alone. Or in danger, that someone wanted to hurt me. I felt that fear, even though I know now it was never real. At every point, everyone around me was trying to save my life. And they did. But the fear is still there — more on some days, less on others — alongside the gratitude and the joy and the pain of what it feels like I lost, though I can never quite articulate what that was. I feel it though, sometimes. I feel it today.

I’m not totally sure what I’m trying to say here, but I think I was hoping to create a kind of guide — some help for living in The After. So many more people can now relate to my experience. I have weird feelings about that — it can be nice, sometimes, to feel special, to have a story that makes people go ‘wow, really?’ every time you tell it. Maybe that’s just me, maybe that’s messed up but I know I’ve felt it. It can also be nice, though, to feel understood. It’s also awful — what have people gone through, to be able to understand? That’s one of biggest things I learned — that there are so many people do. That you will be comforted by those who have felt these unimaginable things and learned to sit with them, who will sit with you. But also that your heart will break, sometimes, when you think about how they got there. How you got there too. I’m here, I’ve waded through some of that muck, and maybe, after ten years, I can offer some insight on life after you survive. I don’t know if it’s good insight, but it’s what I have.

This is not advice. Well, it sounds like advice, but I’m really only giving that advice to past me. I don’t understand what anyone else is going through, not really. I don’t even understand what I am going through a lot of the time. But this is what I’ve learned and maybe it will help you. If any of this helps you, please take it. Please have it. Leave the rest, come back for it later, find it somewhere else — I don’t care because it’s none of my business, it is only yours. I hope I can offer something that helps. But more than that, I hope you find things that help. I hope you find them everywhere.

• It never looks how you, or anyone else, expects it to. You will be overwhelmed, completely struck still, by sadness or joy or pain at completely random times. Over time it will happen less often and you’ll start to see the patterns behind it — it might not surprise you every time, but it might still surprise you a lot. That’s ok- it’s too big to hold and too strange to make sense. I now spend my time studying museums and feelings and trauma and I already knew, but now have much better language for, the ways that trauma defies explanations and sense. It is too big for anyone to hold or to understand. We can only live it and try to keep standing through those waves, or, when you have to, learn how to swim back to shore.
• You will find comfort and wisdom in the weirdest places. Or at least I did. Some of the things that have helped me include: young adult fantasy novels, The Unbreakable Kimmy Schmidt, memoirs of survivors of horrible atrocities, studying epidemics and failed colonies and human disasters, romance novels, fanfiction, visiting museums to face the medical implements that saved me, crying in museums, crying at memorials and remembrance ceremonies, crying by the ocean, Crazy Ex-Girlfriend, Roxane Gay, hearing trains outside my apartment at night, tarot cards, a stuffed bear from a dead grandparent, rocks and shells with memories attached, walking alone through cities, old pilgrim routes and ones that I’ve made up, very big trees and very old buildings. So much of the media that has helped me most is also very flawed — it’s lines from mediocre TV shows and movies and books, messy fanfiction stories written by people (possibly teenagers) who’ve clearly processed some trauma, wisdom from so many sources I can’t always explain. But it doesn’t matter — I don’t need to justify it to anyone. I get to decide what matters. I can hold part of it without believing all of it, if that’s what I need. These pieces have been too important to me for me to let them go easily, so I don’t. I hold those moments of understanding close. I write them in journals and on post-its scattered around every place I’ve lived, I make playlists of the songs, I bookmark the fanfictions and underline passages in books and buy books just so I can underline the passages I heard in audiobooks. Find those pebbles wherever you can and, if you’re a person who likes to hold on to things like me, hold them tight in a way that feels right for you. For me, they are like amulets — sources of strength, things that help me feel connected or things that help me feel when something needs to be felt. One day, they might not mean so much anymore. I recently revisited a book searching for that one line that made me catch my breath nine years and eight months ago and I could barely find it, thinking this? Really? It’s not that special. But it mattered to me then, when I needed it, so it will always matter even if it doesn’t matter in the same way anymore.
• You will not understand a lot of whys. Or maybe you will, I don’t know. I’ve never believed in a universe that did things on purpose, that had a plan. Maybe I’ve studied too much grim history. I have no answer for why this happened to me and I don’t want one — bad things happen every day and no one deserves them. But if we survive them, we get to shape what they mean. I kind of hate that idea too — your trauma, your pain doesn’t have to mean anything. It can just hurt. It doesn’t have to have made you stronger — in many ways, I am so much more fragile than I was before. But I am also different, and I don’t hate all the differences. Some of them I like. Either way, they are part of me now and I can’t get rid of them, so I will find a way to live with them. I will at least try. That is mine, only mine, and not a single other person can tell me how. I can ask and I can listen and I can learn from them, like the quotes stuck up above my desk, but they don’t know. They can’t. I can’t, not really. No one can know completely, and no one can know for you. You do not have to explain your why to anyone. Or your what or your how. You don’t even have to explain it to yourself. You probably can’t, not completely (I definitely can’t). But I hope you can find an important why or what or how somewhere, in your life, your present, your future. Yesterday, I called my brother and started crying because I can’t believe I almost didn’t meet my niece — but I did. She’s one of my whys. The friends I’ve met, the people I’ve loved, the new places I’ve been and the homes I’ve returned to, the food I’ve eaten, the times I’ve danced alone, danced with friends — these are the things that tell me why I want to be here, what I’m glad I survived for, how I want to spend this time that I almost never got. I hope yours bring you joy, even thought they might also bring you pain. And when you find someone who understands them, it will feel so beautiful. Don’t be afraid to share them, but also don’t share them completely — they are yours, no matter what anyone else thinks or does.
• Don’t be scared of the big feelings. Well, that’s not totally true — you will be scared and they will come anyways. As much as you can, try not to believe everything they want to tell you about their own scariness. The big feelings will be different for everyone — I tend more towards sadness and romanticism, an almost painful sense of gratitude and nostalgia. Rage makes sense. So does pain and joy and everything else. Numbness too. Sometimes, the numbness will save you because everything is just too much. That’s ok, but you can’t live in that forever. If nothing else, you will get very bored. But sometimes, sometimes everything in you will tell you, will SCREAM, that you cannot look at the big feelings. That if you open that door and look behind it, you cannot possibly survive what you will find. As far as I know, that has never been true. We can hold a lot more than we think. And often, if we don’t try to hold it, if we just let it go through us, it feels so much less dangerous than we imagined — this? This was what I’ve been running from? In my case, running for years. Convincing myself I was lucky to be alive, everything was fine, I’d survived and I was coping and I didn’t need to open that door. But the door was still there and I started to get more and more frantic trying to avoid it. Lashing out, melting down, arguing with every single mental health professional I encountered because I was terrified. I’m sure I would have done a lot of that anyways — I’ve always felt feelings so big that I learned to be scared to face them (and I’ve always argued with therapists). But these feelings were bigger than I had ever imagined they could be, in the before, because my body now had this huge thing to hold — the fact of my almost death and my altered life. I still can’t face them all the time. Sometimes I need help, sometimes I need a break. But, as Kimmy Schmidt taught me (and some good therapists, probably, but I learned it there first), if you don’t make space to deal with it, it will come out anyways. Often at very, very weird times. So deal with it when you can, or when you have to. Ask for help or just for company, reach out to something that tethers you, find a light to look at as you swim for the shore again and again and again. It might suck. It might suck a lot. But that doesn’t mean it will destroy you. It hasn’t destroyed me yet. My fear was founded — it fucking hurt. But it didn’t destroy me. And it hurt so much less, and for so much less long, than everything I did trying to avoid it.
• Find joy and meaning where you can. Even (especially) if it looks weird to others. In undergrad, researching my dissertation, I encountered the 17th-century diarist Samuel Pepys who was so grateful to survive a surgery that he ‘did resolve while I live to keep it a festival.’ The year After, I celebrated the first annual Nina Didn’t Die Day. I do something to make me happy on a day I’m going to be feeling weird about anyways — celebrate with friends or with new acquaintances, eat favorite foods, visit favorite places. Whenever I explain it to someone else, I get nervous they’ll think it’s weird or morbid or upsetting. So far, no one has (or at least, not to my face). And even if they did — it’s still mine. I can do whatever the hell I want. Mark the bad days, the good days, whatever days you might need some extra help to get through. Do whatever the hell you want. This year, I’m going to visit the location of Samuel Pepy’s house and raise a toast to thank him for the idea. Might not sound like fun to anyone else but it will make me smile and also might make me cry — it matters to me, and that’s all the reason I need. But I will also share it with friends, because I have found people who can be right there with me whether they fully understand or not. If you find joy or meaning, or both, you can also share it. You don’t have to, ever — it is always, first, yours. But sometimes the sharing is its own meaning. I am grateful for every single chance for joy, for meaning, for connection I have had in the last ten years and sometimes it seems like I feel them all at once — a wave of gratitude and happiness and disbelief that I almost never got this and this and this — can you imagine? So much joy and gratitude felt all at once that it starts to hurt. It feels like too much sometime. It feels that way today. Tonight I am going to rest. Tomorrow, I am going to celebrate in my own way and probably end up crying in an alley in central London. I am truly grateful, no matter how weird it may sound.
• Try to love what you have now, even if it’s the stuff that might seem bad to other people. Even if it’s complicated. I love the scars from ten years ago. I love them so much I forget that scars can be seen as unequivocally bad, depending on who you ask. But I have also felt self conscious, tried to cover them up, not known how to explain them, especially the ones that are usually hidden. I am not saying you have to love your scars or any single other part of you. But if you do, if there’s something that you’ve kept in The After that feels valuable to you, that feels like warmth and love and something precious, hold on to it. I’ve always had a bad memory and I wonder if that’s why I’m so sentimental — holding on to things to remind me what I felt because I don’t trust myself to remember on my own. I can’t leave my scars behind so I can’t forget, not completely. I don’t want to forget because I don’t want to forget her — the girl that was. For me, that makes my scars feel precious — they keep her with me, they keep the memory and the gratitude and all of those big messy feelings with me so I won’t forget. I don’t want to forget, but you might. That’s ok. Maybe none of this will make any sense to anyone else, but it doesn’t have to. Love whatever parts of this life you can because it’s your life and you’re here. As one of my very wise friends once said “You are not special. You are just here. And it’s the being here that is special.” Love what in the here feels special.

I don’t know if it’s healthy to feel that strong a divide between her and me, the girl that was (I always think girl, she feels so young) and the woman that is now. The stories that I’ve reached for show me I’m not the only one who feels that divide, and also that gratitude. She got me to that point ten years ago and, somehow, she got me through it (her, an absurd amount of medical professionals and a shit ton of luck, privilege and access). Now I am here, living in that same body, but different, and trying to honor her memory. I think I’m doing ok. I hope she’d be proud. I know I’m proud of her.

Tomorrow, I am going to go on a walk through London, a city I love and almost didn’t get to know. I am going to celebrate with friends who I almost never met and call friends who were always there. I’m going to look at the beautiful flowers my parents sent me because they remember too. Of course they do. I am definitely going to cry. And I’m going to think of her. I wish I could give her a hug — we both could definitely use a hug — but I’ll dance to some her favorite songs instead, which she would have liked almost as much. I’ll dance for myself, too.