We’re a PhD cohort like any other, maybe—this is my only one, so I’m not sure. (NOTE: I suspect we are ridiculously good-looking versus the norm. I have no evidence to back that up.) We are a small-ish PhD cohort (n=8). In 2012, we entered an academic department that was growing tremendously fast on a wave of hot methods takes, like data science and surveillance of social media behavior. We got caught up in a lot of powerful research and social forces. When we had to adopt an official cohort color (don’t be jealous, that’s an iSchool thing), we agreed on the moniker “T2 Liquid Metal Cohort” because as researchers, we could morph and adapt. Just like the bad guy in Terminator 2, obviously.
One of our powers in counteracting those forces was our ability to hold on to one another. We’re like sea otters who doze together, floating in the water while holding otter-hands so they don’t drift apart. Much of our affection and care bridged the times we were too busy, or too disconnected, to actively take care of one another. One example: Zak and Tez hug when they greet one another, as though no time has passed. Another one: Sandy nods her head in a small gesture of joy as other cohort members trickle in to our gatherings.
Not all of us can make it to every cohort gathering all of the time. Life and the PhD program have this crazy intersection: life is nuts, and on top of that, we decided to go to grad school (?? I’m done, and I still marvel at this decision). These demands on our time deserve a lot of respect. However, the solidarity of our PhD cohort is much more powerful and motivating than just showing up at any of our individual events.
In February 2014, I notified my PhD advisory committee that I’d been diagnosed with stage IV cancer. I did that as soon as I knew what treatment would entail. Naturally, this was after speaking with my PhD advisor, distant family, and local support system to figure out how we would coordinate care. Thank goodness for those people!
My cohort members were the second big group of people I struggled with notifying that I had cancer. The subject headline of that email to our cohort email listserv was: “A little hiatus,” which, at the time, I hoped it would be. I wrote and rewrote that email many times. My cohort-mates were at the top of the list of people I was afraid to leave, even though I didn’t know what leaving meant right then. I ended the message with, “I love you all!” because it was as true then as it is now.
To be fair, a lot of wonderful people loved me while I went through cancer treatment and survivorship. There are so many ways to love someone, which I now appreciate more fully. When I look back on my life before cancer treatment, I realize I wasn’t always good at recognizing or giving some kinds of support. The best thing about my PhD cohort was that they talked to me like I was still competent and normal, despite the fact that I felt bald, and weird, and out of place.
It’s because of my cohort that I felt okay coming to campus during treatment. It’s because of their support that I didn’t doubt I could keep on getting through the program. Their belief in me combined powerfully with the logistical, emotional, and academic support of my parents, brother, friends, and PhD advisor, Dr. Wanda Pratt. I want my cohort and anyone reading this to know how they contributed. I want other peers in their place to know how powerful such support can be. I hope we learn to lift up one another, no matter the challenge, in academic pursuits.
I (still) love you all, T2 Liquid Metal cohort!
Here are some thoughts about bodies.
All my life my mum has said I’m built like a brick outhouse. Especially as an adolescent, I thought I had such body woes. Don’t we all.
Now I can’t feel my feet because chemotherapy left me with lingering neuropathy. I walk slow, but I haven’t had to re-learn to walk, like other survivors I’ve met. When I cross the street, I’m grateful for my legs (after wasting away during chemo, these legs are back, babe, thanks to the monster dose of daily steroids that keeps my lungs functioning).
Oh, and my lungs. Bleomycin pummeled my lungs. Bleo is a wonder chemotherapy drug, but sometimes it wraps up your lungs in a web of wooly tissue. You can see it very clearly on a CT scan. That’s called pulmonary fibrosis. It’s a permanent condition, except when it isn’t.
That’s where I am right now. I move slow but think pretty quickly thanks to the steroids. Some days I have manic thoughts. The steroids still give me hallucinations. It’s exhausting to talk with me, and if no one wanted to talk with me at all, I’d understand.
I no longer fret over looking like a rugby player in a dress. My favorite thing to do during treatment was to try on clothes and give myself manicures and watch makeup tutorials and try to tie headscarves. My friends did all these things with me because they are the best.
I’m sure I’ll forget to wax my eyebrows again someday, Andy Rooney-style (once they grow back). This vanity won’t last forever. But modesty isn’t a thing when you are a cancer patient, either. So I love what I can about this mutinous body. Now that I’m allowed to exercise and travel and run – albeit slowly – I cherish this meaty suit.
I can write things like that. “Meaty suit.” Ha ha. It’s a thing you do to be funny and self-deprecate when you have a body that is valuable to society.
The uncomfortable truth, though, is that we make it clear that some bodies are not valuable. Not even from their beginnings.
Because in the West we think even of people in terms of economic value, we design spaces to suit valuable bodies and their endeavors. When you are a slow pedestrian in a crosswalk, people get impatient in their cars. People in cars likely have somewhere to be, and money to spend when they arrive.
The people who have less valuable bodies receive less from society, in a spiral of – strictly speaking – unfairness.
Less safe space in public or public transit: street harassment of women, and especially women of color.
Fewer chances to be human and fall outside of expectations of people in power: minor traffic stops turn into major legal troubles for minority citizens.
Reduced support for basic necessities like food or health care: cuts in social services mean families make rational, economic choices – and are then demonized for behaving exactly the way the system is designed to engage them, suffering from crap food and skipping expensive checkups or dental care.
Or – let’s get really basic – value judgments about bodies reduce our ability to know and provide dignity. For better or worse, we’ve institutionalized a lot of human services and that makes us bad at messy bodily things. Such as dealing with sickness. Or dealing with death.
A particularly potent threat of sickness and death – to the West – is our fascination with Ebola. I imagine Ebola scares us because it unknits the body tissue itself, slipping viscera from the relatively neat shell of the body. Then – where Ebola is occurring in the world – existing cultural rituals of washing and interring the body heighten the chance of viral transmission to carers in the family.
Western society doesn’t know what to think of these (unpaid, unprotected) carers. Or we think, they should know the science about germs. Or we think, how hard would it be to have some institutional hygiene? If we are used to framing the problem economically, in our mind, then education is the only place to start.
Except: it’s difficult to learn when you are scared. As in, mortally scared. I’m not a cognitive researcher, but I can say from experience that fear defeats the active learning brain any day of the week.
Why won’t you sleep? This was the question to me after my first chemo treatment. I needed blood transfusions regularly because my bone marrow acted all useless due to cancer metastasis. I was given all kinds of drugs to sleep. I could fight through the drowsy part when I took Ambien. Then I hallucinated from lack of sleep, steroids, and…Ambien.
A tall lady crawled out from behind the dresser in the bedroom one night to let me know chemo was actually part of a Matrix-type experiment and that once all the valuable minerals in my body had been depleted, I would die. This was probably in a dream, but hallucinations are also a thing for me. So I decided not to sleep. For the foreseeable future. One night, I thought: perhaps I’ll get out of bed and tell my mom what the tall lady’d said.
NO, I decided. WHO KNOWS who else is in on this? And the next time I was hooked up for a chemo infusion, I gave the nurse the side-eye.
Why won’t you sleep? The nurse asked in the tone of a potential confidant. I hesitated. And then I told her I was afraid if I slept, I wouldn’t wake up.
They gave me a psychiatrist to help explain why I wouldn’t die in my sleep, and further, that they wouldn’t let me die in my sleep. Aren’t you a PhD student? They asked me. That’s not how the body works. They told me. But in my very scared state, reassurance was infinitely more important than any explanation.
The doctors were right, of course. No one was going to let me die. I go to a great hospital. My doctors believed me when I said I was in pain or something was not working.
There is nothing to automatically reduce my credibility with doctors – like having a drug addiction in the past, or being a minority, or poor. The implicit economic and social value of the body I possess is part of that.
Sometimes the hospital puts patient testimonies on the bus advertisements in my city. The bodies in these ads look diverse, but it is clear the person on the bus needs to be an economic success story. One lady is quoted as saying she gets to have a family. A college student celebrates continuing to make classical music. Another man finished his degree thanks to his doctors.
Hopefully in a bit I’ll be one of those survivors like the side-of-the-bus people. I am grateful for that. I would like for everyone to have a body of value, and for us not to have to experience cancer or disease closely, or firsthand, to think about the social consequences of devaluing bodies based on an imposed economic model. This is a lasting impression far more important than the biopsy and port scars that I’ll carry with me forever.
I try to not to give advice. Unsolicited advice seems like a passive-aggressive way to comment on another person’s choices.
But…I felt like this was too important not to share. I’m not framing it as advice, just an experiential tidbit from what has come to pass with me.
The fact is, when you tell people you have cancer, they don’t know how to react. And that is a-ok. We all know cancer happens, but we hope it never happens near us, and there’s no reason to walk around expecting to have to react to news of a cancer diagnosis (that would be worrisome; please don’t walk around expecting that).
In any case, once your life gets upended by getting the cancer diagnosis, you have to tell people for various reasons. Because travel plans must be cancelled. Because you can’t get out of bed for a few days in a row. Because your hair fell out and now you look like a badass, e.g., Ripley from Alien. Etc.
I’ve been thinking about it, though, and the most comforting reactions I had all had the same thing in common. The person I told would pause for a moment and then say (in person) or write back (if over email): “That must have been hard for you to tell me.”
Do you know how great it is to have a person acknowledge the difficulty of carrying around and doling out cancer diagnosis news? It made me feel like – reminded me that I am – a person with lots of feelings, rather than a sick, scared husk of disease (which is how I felt most of the time).
I remember everyone who reacted that way, and treated me with that tiny extra bit of dignity. To anyone who reads this: maybe this post will help you someday, even if I hope you never need the advice.