Samira Rajabi, Ph.D., is an Assistant Professor of Media Studies at the University of Colorado who has focused a significant proportion of her research on how people grieve ambiguous traumatic events. She is a writer and speaker. Her first book, All of My Friends Live in my Computer: Tactical Media, Trauma and Meaning Making, is available now. You can view her TED talk on trauma here. She is currently working on a new book tentatively titled The Life I Thought I’d Live: A Field Guide to Uncertainty, Grief, and Using the Digital to Find a Path Forward.
1) A large corpus of your research has focused on “ambiguous grief.” For those who are unfamiliar with the terms “ambiguous loss” and “ambiguous grief,” what do they mean?
Ambiguous loss is a term I got from Pauline Boss. She’s a psychotherapist. The term essentially means a loss that results in unresolved grief. It represents the kind of loss that we don’t have rituals for. Specifically in Western, individualist, capitalist contexts. We’re trained to think that, “You can control the world,” or “You can manage the world,” or “Your destiny is in your hands if you just work hard enough.” Then things happen where it’s like, “Oh, wait, is it in my hands, or is it just this weird, crazy thing happening?” They are losses that don’t necessarily make sense according to our social scripts, the cultural scripts that we have; we don’t have established funerals for these types of losses. An example from Pauline’s book is grieving somebody who is missing in action. You’re asked to grieve the loss of a person, but there is no concrete loss.
I’ve extended Pauline’s theories to think about that unresolved grief. I’m calling it ambiguous grief. Asking, “What are we doing with that?” If we don’t have a ritual, what are the rituals we’re creating? What steps are we taking to inhabit that uncertainty and manage the grief? Because grief is already uncertain in so many ways. We are not a culture that knows how to sit in vulnerability particularly well; I would say, as a generality—we already don’t know the best ways to manage grief, so ambiguous grief is that much harder to deal with. It’s a grief that is not always legible to other people. They can’t always see it or understand it, or understand the gravity of the loss. Because the loss was ambiguous, it’s hard for people to show up for each other. It’s hard for people to know who they can turn to when feeling this kind of grief. In my research, I am tracing where people are ritualizing this kind of grief so that they can cope with it, and so they can manage it.
There is this phenomenon of where the individualism that is built into our culture on and offline, this idea that success is measured in a particular way—if it doesn’t fit your circumstance, it can feel really isolating. If you’re going through something that doesn’t fit the script, and suddenly your life feels out of control of normative boundaries and parameters that society has set forth as what makes you happy and successful, then you also feel really, really isolated. Some losses can feel like a personal failure. So not only are you dealing with some kind of a loss, but you’re also dealing with the sense that the loss has removed you from your ability to participate in your social environment.
When you look at online media, it exacerbates the issue because it runs on the machine of capitalism to get us to do free labor, to produce ourselves in this curated image. And so the crux of my work is examining when people are given the opportunity on a platform to say and do things, how can we enable them to say, “I’m not going to be here to promote myself; I’m going to be here to find other people who are just as lost as I am.”
2) Your recent 2022 WDS X keynote centered around reemerging from a significant medical setback and the process of rebuilding your personal narrative after it became clear that the preconceived ideas you had for your future would need to be reinvented. For anyone going through something similar, what did you find helpful during this time, and what might you have done differently?
I hit landmines, but there were a lot of things that I found helpful as well. The first thing that was helpful to me was finding other people. People who, even when they weren’t going through the same exact thing I was going through, were going through something similar enough that they understood that what I was looking for was someone to say, “I hear you, and I’m here with you,” versus, “You’re a fighter, you’re so brave.”
I had been diagnosed with a benign brain tumor. Most people hear benign brain tumor, and they’re like, “Oh, at least it’s benign. Plus, you’re such a fighter; you’re so tough.” In reality, I am 26 years old, and a doctor told me, “Do nothing, and you’ll probably die in two years, and it’ll be fairly mysterious to everyone around you.” I’m like, “That’s not benign. Your terminology is flawed.”
I had to find people that understood, and that’s where my search turned to the digital because I found brain tumor communities online. Fortunately, I found a young person who had gone through an astrocytoma and had been looking for support, and he created a brain-tumor social media community. He took me in on Twitter, and it was just someone to say, like, “I’ve been there, and I’ve gone through it.”
During this time, I really clung to those people. In retrospect, I inhabited a lot of this, “I have to not only overcome this, but I have to overcome this better and stronger than I was before.” Disability studies call it the “supercrip,” where disabled bodies are asked not just to perform, but to outperform able bodies. I really inhabited that mentality, so much so that after my first brain surgery, I was like, “You know what I’m going to do? What’s the hardest sport that’s happening right now? Oh, CrossFit? I guess I’ll start that.” So when I was told, “You’re cleared for physical movement at six weeks.” Day six weeks and one, I was at a CrossFit gym. I’m like, “What’s your heaviest weight?” like a total idiot. I did have to go back to the hospital after that. It was not the best decision I’ve ever made. So I would have done that differently.
I learned it is important to take the time to really sit with yourself and know yourself. A lot of people come to me now (at the time I was getting my Ph.D.), and they’re like, “You stayed in school; do you wish you hadn’t?” And at first, I was like, “Yeah, maybe.” But really, being idle doesn’t serve me very well, so I was not really honest about what I could and couldn’t do, but I was really honest about what I really wanted to keep trying to do. I was lucky that I was afforded enough flexibility to do that. I know that’s a privilege that not all workspaces or other environments have.
One of the things that helped me immensely was finding the people that will let you feel seen. And then, let yourself see yourself. “What do I actually need right now? Do I need to be home in bed convalescing? Do I need to go for a walk? Do I need to be around people? What do I actually need?” It takes time to figure that out, and it’s really, really hard to be honest sometimes because some of the things you end up needing aren’t the things you feel like you should need or should want.
3) In my work, I’ve been fascinated that “happiness” to some degree is a socially normative construct, and once you become aware of this, there are some benefits to being enlightened to this fact. I get the sense you have similar feelings about the concept of “normal.” Can we unpack this a bit?
We learn what “normal” is by a lifetime of being told what is not normal. Because of this, we try to inhabit what is normal and deny what is not normal. A lot of what’s built into this idea of normal is compulsory abled-bodiedness and compulsory heterosexuality, and that’s just not for everybody. That’s not accessible to everybody, even if that’s what every single body in the world wanted, which it’s not—it is not accessible to every single body. Once you accept this as true, you can start to look at your own body and be like, “Maybe it’s fine. Maybe it’s okay. Maybe it doesn’t look like this myth that’s been circulating around me my whole life, but that doesn’t mean it’s bad.”
Removing yourself from the judgment of good or bad that comes with normal or not normal—and I agree, it’s the same thing with happiness. It’s the same thing with so many of these constructive categories. Once you realize that these things we’re striving towards are things that people made up and, over time, people with power and authority cemented them as values, then you can say, “What do I actually value, and what do the people around me actually value? What do the people I admire actually value, and how do I orient myself around that?”
That is the actual “work” because it’s not easy to be like, “The world thinks this is great, and great equals normal. And I’m not that, and I can never be that, and I’m going to be super proud of that.” We’re still humans that feel our way through the world in our bodies, and that can be a hard place to be in, but it can also be a really freeing place.
My research comes from a post-structuralist framework that really believes that there is a discourse that becomes dominant through systems of power. The good news is there are competing ways of the world that have the possibility to rise up and push back against that. And that possibility is so full of hope to me. It’s not the outcome that’s guaranteed, but the possibility for a different path. That, to me, is just endlessly hopeful.
4) Your book All My Friends Live in My Computer explores how trauma disrupts one’s meaning-making schema and what some people do after trauma to try to rebuild. Since we just explored the potential pitfalls of allowing others to overly influence our perception of common constructs, what are helpful considerations as someone begins the meaning-making process anew, especially when their mode of doing so is outwardly (e.g., pursuing connections online)?
Much of our meaning-making schemas—the ways we go through the world, and what makes the world make sense for us—are collectively built. We intuitively do not decide one day, “I must go to work.” That’s collectively built. We learn that we collectively need families, we need social structures, and we need whatever it is that we have.
When you don’t feel like you fit in, it becomes important to find a new framework. You can’t build that totally alone. I believe you need other people to help you build it, other people to help you figure out what it is you do and don’t want after “normal” has been disrupted. The biggest thing is finding people who might help you reframe your relationship with the world. People to help with the work of knowing, “What is it that I actually need? If I don’t fit into the framework of the capitalist daily grind of getting up in the morning, rushing to work, working as hard as I can, giving most of my day away, coming home, cooking a meal, going to bed, doing X, Y, and Z, whatever; if that framework can’t work for me, what could?” Maybe you won’t get to the answer right away. It’s not an easy thing to answer, so finding others in similar situations helps.
These relationships help ground knowing where you are. These connections are built not necessarily because we all see the world the same way, but because we’re experiencing one singular experience that brings us together. Me and the people in the brain-tumor community, we don’t have everything in common with each other, but we have this one big thing in common. So it helps us orient to some of the other big things in similar ways.
5) Once we’re in a place where we feel safe to reemerge from trauma, many (myself included) are reluctant to ask for, or build, what I call our “accessibility ramp”—the space or things we need to successfully navigate within what’s left. What advice do you have on reducing one’s resistance to change when one is piecing their life back together?
I think that’s a beautiful question because I think it’s so salient. A good friend of mine, his name is Ben Whitehair. His mom died a few years ago. He had a tough relationship with his mom. He created a beautifully written blog post about the lessons he learned from his mom’s death.
One of the things I learned from reading that post, Ben says, “There’s no extra credit for the struggle.” I think that’s what we don’t get. We’re so tied up in these ideals, I really think it gets back to the idea of normal. We equate normal with young, able-bodied, normatively attractive bodies that are capable of movement and sight, hearing and speaking, and walking and doing all of these things according to a certain script. These scripts don’t actually work because as we age, we all become disabled. All of us! That’s just the nature of the human body.
Acknowledging this fact—letting ourselves know there’s no extra credit for the struggle. You can keep acting like your body is 25 years old, but the fact is, it’s not. So: Do you want to be in your life? Or, do you want to be performing your life as though it was something else?
I’m a fan of Peloton, and Robin Arzon (a Peloton instructor) the other day said, “Let’s resist this narrative that aging is decaying and just sit in the fact that our bodies are changing.” They may be capable of doing a Peloton ride, or they may not be; that’s not the point. But they’re going to change; they’re changing. They’re going to lose ability. Maybe they’ll gain wisdom in the process; maybe they won’t. It doesn’t matter; they’re going to change.
Back to the line that has helped me so much, “There’s no extra credit for the struggle.” I deal with 18-year-olds in my classroom. They come in, they’re anxious, and they want to perform well. They want me to think highly of them. Then a life event happens: they get COVID, or they get a concussion, or they get an injury. And they’re like, “Okay, but I’m going to stay in class.” And I’m like, “Please don’t, please go home,” especially if it’s COVID.
Even if it’s like, “I got a concussion.” Why do you want to stay in class? “Because I’m a good student.” I believe you; go home! “No, no, no, no, no. I have to stay here. I have to perform well. I have to perform what I think success looks like. I must perform what I think a normal or good student looks like.” They’re so stuck in that performance, and you can see that performance starting to crack. They’re ready to cry; they just won’t let themselves. I sometimes simply retort to them and say something like, “Hey, but are you okay?” And then you see this whole thing fall away, “No, I’m not okay. I have a concussion; I need to go home.” Please go home; there’s no extra credit for the struggle.
Let’s do the things we need to do to take care of ourselves so that when we are “in” our lives, we’re really in them.
