Where I Am and Where I’ve Been

Closeup of a frozen creek.
A scene from my favorite winter hike so far. Also an apt metaphor.

For weeks now I’ve been begging myself to write something, anything. But the words just don’t come.

It’s not that I don’t care anymore about the things I used to write about. Though I do click away from the news a lot of the time, I know I care, it’s just that my brain is usually too full with a buzzing sort of panic about my impending loss of autonomy, mobility, dignity, bodily integrity. That’s when I’m not panicking about simply dying.

I think about very little else anymore. The surgery. Researching everything I can about the surgery. Looking up and buying things for after the surgery, special clothes, pillows, anything to reduce my dependence on other people. Writing down lists of questions to ask some doctor at some point. I’m not always sure which questions should be directed to whom–the medical oncologist, the surgical oncologist, the plastic surgeon, the anesthesiologist, a social worker. Recounting to my parents my meticulous list of boundaries to retain whatever control I can over this impending horror–instructions about when they can and can’t see me in the hospital, when to give my phone back to me, who can touch or see what or how. Listing activities I may be able to do while I’m recovering–reading, writing, knitting, gaming, drawing–and making sure that I acquire everything I need for all of these things just in case something sticks. Planning out outfits that I will be able to dress myself in, independently. Asking the surgeon questions like, “Are you saying you don’t RECOMMEND that patients do this on their own, or just that they may find it uncomfortable and want to ask for help?” Because I will take the discomfort.

It has turned into a full-on obsession, and some part of me realizes it’s not healthy, but at the same time it’s also a coping method. It is easier, and probably healthier, to make packing lists than to let myself “be with” the fear, and imagine over and over being ripped open and stitched up again with tubes coming out of places they shouldn’t be and stuff that’s not supposed to be inside my body being inside of it and stuff that was supposed to be in there not being there anymore. And to be clear, I certainly imagine plenty of that. It comes completely unbidden. It’s a wild, untamable, primal fear. I’m like an animal being led to slaughter. My mind flings itself against the bars of its cage, over and over, despite the damage it does.

This is what it looks like to face down your worst, most paralyzing phobia. I used to say, half-jokingly, that if I ever required the sort of surgery that involved general anesthesia and opioids, I would refuse and simply die. Life called my bluff. I’m not dying, at least not yet.

Plenty of people have pointed out that there’s something maddeningly counter-intuitive about treating early-stage breast cancer, and that’s that it often feels like poisoning and mutilating a perfectly healthy body. I had no symptoms aside from an innocent-looking lump that nobody, not me and not the doctors who initially observed it, really thought could actually be cancer. Now that lump is gone thanks to an overwhelming response to the chemo, and I have to face the idea of having part of my young and tumor-free body hacked off so that I don’t die later. There’s also the thought that if I hadn’t noticed the lump, I might very well be dead now, or rapidly getting there.

The thought keeps going through my head: “And for what?” But I know for what. It’s so that I don’t die. That’s literally all. And though a double mastectomy doesn’t guarantee a cancer-free future, it at least offers a strong hope for one. Without it, that hope would be quite frail.

At the same time, and perhaps because I never exactly felt “sick” or thought of myself as sick, it feels like I’m sacrificing an awful lot just to have what I always naively assumed I’d have anyway–a reasonably long and healthy life. The surgery doesn’t feel like a treatment; it feels like the disease itself. I’m not healing from cancer, I’m healing from something I elected to have done to me, for reasons I can’t quite remember some days.

And yet, being the sort of person I am, I never seriously considered not doing it. Anything other than the double mastectomy seems like a betrayal of who I am, not to mention a betrayal to my loved ones who would have to spend the rest of their lives, like me, fearing recurrence. None of us deserves that kind of fear.

The surgery is a sacrifice that present me is making for future me, for some version of myself I can’t quite envision yet but will have to eventually become. That person will have accepted her new body, or at least gotten used to it. That person will, like the women in my support group, joke cheerfully about the awkward things that happen when you have no sensation left in your chest anymore. That person will maybe date new people again and find some way to explain the breasts, or not. That person will still think about cancer but not every single day.

That person will no longer believe that she’d rather die than get surgery. That person will also be much older than her years.

Don’t get me wrong, this isn’t the way I’d recommend doing exposure therapy for your medical phobia. But this is the way I’ll have to do it.

This is my longest, darkest winter, the winter time stood still. You don’t move forward when you’re fighting something like this; you’re just planting your feet, pushing back, and hoping not to be thrown off the ledge. My career is at a standstill—I have no idea when I’ll get enough supervision hours for independent licensure now. I forget the last time I met a new interesting person; it used to happen every week. I exercise and yet my body grows no stronger. I don’t really get to try and learn new things anymore. Everything I’d planned to do—practicing on the motorcycle, starting a vegetable garden, volunteering at the humane society or the botanical garden, planning a future coaching business, looking into selling my bread at the farmers market—is now delayed indefinitely.

That I knew something like this was probably coming doesn’t help much. For the two years leading up to my diagnosis—the two years since I moved to Columbus—I loved my life so much that I knew it couldn’t last. “Something’s going to happen to fuck this up,” I thought. I’d spent most of the first 24 years of my life pretty miserable, and now I finally wasn’t, and it couldn’t last.

And it didn’t.

And yet, unbelievably, it also did.

There is so much joy still in my life, if not every day then enough to carry me through. I spend entire days with friends sometimes, or else catching up on my library books with the cats cuddled up against me. My parents and sister and I laugh till our sides ache as my brother demonstrates parkour on the lawn in front of my house. Letters and cards arrive weekly in the mail from distant friends, some of whom I’d honestly thought had forgotten me by now. The teapot whistles urgently on the stove. Snow falls, and then rain, and then more snow again. There’s an orchid show at the botanical garden, and I went with my camera, struggling to kneel to take the pictures and stand back up but doing it anyway. It’s 8 degrees, but we go hiking anyway. The regulars at my yoga studio are starting to recognize me, and to know what the hat means. My older brother in London sent me a Switch for my birthday; now when I close my eyes I see beautiful scenes from Zelda instead of body horror. My body aches unbearably sometimes from chemo, so people bring me things. My oncologist calms my panic with his presence the moment he enters the exam room. A coworker finally learned to text just so she could check in on me when I didn’t answer the phone.

And, outside, the days slowly lengthen, and the January chills are gone. Three seasons will have passed by the time all of this is even on its way to being over. The mint in my backyard will have grown back. It has a way of enduring.

As it turns out, I have a way of enduring too.


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Where I Am and Where I’ve Been
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Everything You Ever Wanted to Know About Having Cancer

[Content note: medical stuff]

A few weeks/months ago (what is time, anyway?) I invited my friends to ask me absolutely anything they wanted about what it’s like to have cancer. The result was this epically-long Q&A, which was actually quite fun for me to compile. Folks have been saying it’s useful and interesting for them too, so I decided to make it public.

If you have questions you’d like to ask and you know me well enough to know how to reach me, feel free to send them my way and I’ll answer them when I update this. Ask anything you want; if I’m not comfortable answering, I won’t. But you can probably tell from this article that there’s not much I’m uncomfortable answering.

The first set of questions is dated November 23, 2017, so some of the details of my treatment have probably changed.

Continue reading “Everything You Ever Wanted to Know About Having Cancer”

Everything You Ever Wanted to Know About Having Cancer

Sicklit Literally Traumatized Me

I promise this isn’t turning into a Cancer Blog. Just give me a while to get it out of my system. Along with (hopefully) the actual cancer. 😛

Almost two months ago, I was diagnosed with breast cancer. It’s stage 2, but for the first week, I didn’t know that, which made it probably the most terrifying week of my life so far.

So I started panicking, which is about what you’d expect. For starters, I immediately decided that I was going to die. Like within a year. This subsided somewhat after I learned that the cancer hadn’t spread.

But a lot of my panic was coming from some weird places. I kept experiencing intrusive thoughts about how horrible chemo and cancer in general would be, and they were VERY specific and visual thoughts.

I’ve never been close to someone going through cancer treatment. Certainly not close enough to see what happens to them. My grandfather had it when I was very little (and died of it later), but all I remember of him is that he was happy, did calisthenics every morning, and always gave me fruit to eat, so I’m guessing I don’t have much memory of his treatment.

My only exposure to what cancer and chemo are like is the media. As a child in elementary school, I remember being assigned cute picture books about kids with leukemia. Later, I read a few YA novels where cancer was a prominent theme—what folks now call “sicklit.”

Sicklit is controversial because there’s the usual uproar about kids and teens reading about topics that they’re “too young” for, as if kids and teens don’t experience sexual assault, illness, or abuse. The opposing argument is that reading these books will help young people confront these things if they have to experience them, as well as helping them empathize with others who may be experiencing them.

Usually, that’s the side of any argument about children’s media that I’d fall on. However, right now I also have to acknowledge the fact that I’ve basically been traumatized by literature about cancer meant for young people.

That entire first week, my brain was constantly re-showing me vivid scenes from books I’ve read. Excruciating bone marrow transplants. A teenager going outside at night during a thunderstorm wearing just her nightgown, hoping to catch the flu so her next chemo treatment gets delayed. A girl shocked and crying when she finds a chunk of hair falling out while she brushes it.

That last one about kills me, especially. Don’t get me wrong, losing your hair (if that’s a thing that’s important to you) would be painful no matter what, but why her shock and terror? Did nobody fucking bother to tell her that hair loss is the most common side effect of chemo? Did nobody offer to take her to a salon to get her hair buzzed or shaved, and let her pick out cute wigs and hats and feel some shred of control over the situation?

I mean, sure, it’s fiction. Of course it’s unrealistic. But it’s unrealistic in the most sensational possible way.

Don’t even get me started on teenagers with cancer meeting, falling in love, and dying. That shit made me feel guilty for even having partners right now.

The more I talked to other people, the more I realized that it wasn’t just me, and I hadn’t just read a particularly horrible set of books. My partner asked me once how it feels to get chemo, and recalled a book he’d read about a teenage girl with cancer who described it something like this: “Every drop of that poison burned as it dripped into my veins.”

I about died. Unlike (apparently) the author of that book, I actually have cancer, and I can tell you that chemo feels like absolutely nothing. It’s just like any other IV infusion. You just sit there and chill out or sleep. Yes, sometimes having an IV in your arm can cause some mild discomfort. BUT IT IS NOT SUPPOSED TO FEEL LIKE BURNING. PLEASE IMMEDIATELY TELL THE NURSE IF IT FEELS LIKE BURNING. I’m sorry for yelling but really, you need to tell your nurses and doctors if stuff hurts that’s not supposed to hurt, and how are you supposed to know it’s not supposed to hurt if you read a whole stack of books telling you in the most graphic and gratuitous ways that it does hurt?

That said, over a long period of time, chemo infusions can damage your veins. That’s why they’re not generally done through IVs anymore, but through ports. I explained this to my partner, and he said that in the book, the girl refused to have a port because it sounded weird, and her doctor didn’t try to reassure her, explain how it works, or warn her about the drawbacks of IVs for chemo. You know, informed consent. Okay then, guess we’re going for damaged veins and a hell of a malpractice lawsuit.

I’m glad my partner and I had this conversation so that he didn’t have to go into this thinking that I have to spend two hours in excruciating pain every two weeks for four straight months. Vicarious trauma in caregivers is a thing, just like the vicarious trauma I’m experiencing from reading these things that never even actually happened.

Sometimes when I talk about sensationally unrealistic portrayals of cancer treatment in YA literature, I’m told that somebody’s friend somewhere had cancer and their doctor WAS totally terrible, and their pain was not managed in any way, and they were NOT warned about obvious things like nausea or hair loss, and they WERE told to just suck it up and deal. Yeah, it happens. Some doctors are totally terrible, and until recently many cancer treatment protocols really didn’t care about side effects, and sometimes people are told to suck it up even when relief is totally available.

And it would be one thing if these types of stories effectively prepared young people to deal with such things in real life. But they don’t.

Because the way you deal isn’t by internalizing the idea that your suffering is inevitable and this is just how things are going to be. The way you deal is by learning how to advocate for yourself when possible, and developing resilience and coping skills for the rest.

That starts with knowing that 1) you can and should tell your doctor about all of the side effects and discomfort you’re experiencing; 2) you’re allowed to ask your nurses, techs, and doctors ALL of the questions you want; and 3) lots of procedures and treatments can be altered to make them more tolerable for you, but they won’t be unless you ask.

For instance, my entire treatment team knows about my medical phobia and how it works. (I should note that this phobia is improving significantly now that I have to confront it constantly.) That’s why they often have on hand ice packs and smelling salts in case I start passing out, and they usually find a way to prop my feet up to reduce the chances that that happens. I’ve been prescribed an anxiety medication that I take before procedures, including chemo, and a topical lidocaine cream, which I use beforehand to reduce the sensation of needle sticks. (It’s not that I mind the pain itself; it’s that the pain triggers the panic reaction.) My nurses know not to tell me any unnecessary details about what they’re doing, and they expect to see me put my eye mask on so I don’t see what they’re doing, either.

As a result, I don’t have to deal with uncontrollable panic attacks, and my nurses and techs don’t have to waste their valuable time waking up my unconscious ass and waiting for me to stop sobbing. All I had to do was ask.

I’m sure someone’s going to ask me if I think that authors just shouldn’t write about teenagers dying of cancer or suffering through treatment thereof, but as always, I find that question boring. No, I don’t advocate censorship. Anyone should be able to write (almost) whatever they want. Free speech. Next.

A question I find more interesting is: Do authors who write for young people have a responsibility to try to write in a way that makes their lives suck less rather than more? I think the answer is yes. And as a young cancer patient—so, exactly the person that these books are supposedly for—I can tell you that irresponsibly-written cancer narratives contributed to making my life an unbelievable living hell when I was first diagnosed. I was having flashbacks to stuff that never happened to me or to anyone else. I still do, sometimes.

So much of the pain and misery that comes with a cancer diagnosis is unavoidable. This was completely avoidable.

Of course, there’s a good chance that despite patronizing claims to the contrary, most YA novels about cancer aren’t really meant to prepare young people for anything other than fetishizing and gawking at other people’s pain. Yes, there are some that encourage empathy, too—I do think that The Fault in Our Stars is well-written in that way.

But the fact is that most young people—most people—aren’t going to get cancer. Most people are only going to know someone who does, and maybe the more painful and horrific they think the treatment is, the more they will sympathize, and the more they will help, and the more grateful they will be that it wasn’t them.

So, what I should’ve realized during that agonizing first week is that those traumatizing books were never even written for me. They stopped being for me the moment I got that phone call.

Which is too bad, because I could’ve used a book that could guide me through it. A book that’s honest about the experience of cancer, in all of its horror but also in its mundanity, its potential for nerdiness and curiosity, and even its moments of transcendent clarity. I’m never one to sugarcoat, but even I’ll admit that it’s not just some endless parade of painful side effects, hair loss, and needles. In with all of that bullshit you also get your teenage brother always hugging you super tight and not letting go until you do, and watching the people in your life come through for you in the most extraordinary ways, and having your cat insist on sitting on your surgery incision which hurts but also oh my god she really thinks she’s healing me, and dancing naked–truly naked, no cap or wig–to Christmas music while decorating the tree because it’s almost the end of the chemo cycle and I feel fine, and getting to do physical therapy in a sweet heated pool that the hospital has and floating in that pool and letting the back of your head rest in the water until you don’t hear anything anymore and it’s all OKAY for a goddamn second.

Nobody wrote that book for me. Maybe after I kick this thing, I’m going to write it myself.


A thought that occurs to me that I didn’t find a way to stick anywhere into this essay: YA novels about cancer focus disproportionately on death. I mean, yes, to state the obvious, cancer can be fatal. I don’t think we really need to belabor this point. But did you know that the 5-year survival rate for all childhood cancers combined is 81%? Did you know that the 5-year survival rate for breast cancer, which is the most common cancer, is 90%, and for prostate cancer, the second-most common, it’s 100%? These statistics are from 2006, which means that they’re probably even higher now. (Except prostate cancer. Sorry, probably not much improvement to be made on that one.)

DID YOU ALSO KNOW THAT THE HPV VACCINE PREVENTS UP TO 70% OF CERVICAL CANCERS AND THAT YOUNG ADULTS URGENTLY NEED TO KNOW THIS FACT

And how many of the cancer books I read contained even a little fucking blurb in the back about breast self-exams? Zero. A breast self-exam saved my life. I rest my case.


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Sicklit Literally Traumatized Me

So Your Friend’s Just Been Diagnosed With Cancer

Lost? Confused? Me too. I was just as surprised to be diagnosed with breast cancer at the ripe ol’ age of 26 as most of my friends and family were.

Here are a few things I’ve learned so far about what’s helpful and what isn’t when it comes to receiving support from people. Obviously, I only speak for my own experience here, but you’d probably hear a lot of similar things from other cancer patients.


1. Read/listen carefully to what we say.

Since I draw so much of my strength from writing, I turned to it immediately when I got my diagnosis–not just to talk about my feelings and experiences, but also to express what I needed from people who wanted to help. I wrote out detailed instructions and set clear boundaries. (As did my roommate, who started a Facebook group with some of my other friends and used it to coordinate support.)

Nevertheless, both of us were often swamped with questions that could easily have been answered by reading what we’d posted. People repeatedly asked for my address, gift preferences, dietary needs, and other stuff that my roommate had clearly addressed in multiple posts. It was, honestly, really frustrating. I understand that all of this is hard and that paying attention to written text can be hard and being a human is hard. But surviving the first few weeks of a cancer diagnosis is especially hard, so please make it easier on your newly-diagnosed friend by being attentive to what they’re telling you.

2. Don’t inundate us with irrelevant and overly-specific questions about gifts.

On a related note, it was pretty overwhelming when, within the first couple days of my diagnosis, comments and messages like these started pouring in: “Is there anything I can get you? Do you need hats? What color hats? What type of yarn? Do you like letters? Would it be okay to send a card? What’s your address? What kind of food do you like? Can I send cat photos?”

I 100% understand where this is coming from. People want to help, and they don’t want to help in ways that are harmful or unwanted, so they ask lots of questions about exactly what kind of help would be welcome.

But guys. I don’t care what color hat. Those first days, when I was still waiting for all my test results, I was facing the fact that I could be dying. I could find out that it’s metastatic, that I have a few months or years left, that I’m going to have to tell my 12-year-old sister that I’m fucking dying. I wanted to take these well-meaning people by the shoulders and shake them and tell them that I don’t care what color hat.

If you’re already making/doing something specific, such as knitting a hat, it’d be more helpful to ask, “Is there anything I should keep in mind when making this for you?” That’d be a good place for me to ask you to avoid Breast Cancer Pink, for instance. (Although, again–I really don’t care about stuff like that very much right now.)

Otherwise, I’d suggest directing these questions to a caregiver, such as the person’s partner(s), family, or closest friends.

3. And about those cat pictures…

I’m going to reiterate that I’m only speaking for myself here, and not for any other survivors or anyone else living with a serious illness, but boy howdy did it ever rub me the wrong way when people immediately wanted to send cat pictures following my diagnosis. Cat pictures are nice for when you’ve had a stressful day at work or you need to forget about political news for a bit. “Sorry to hear about the cancer, here’s my cute cat” doesn’t really work.

4. No medical advice. None. Nada.

In my opinion, giving unsolicited medical advice when you are not that person’s doctor is always wrong, for a variety of reasons. However, it’s especially wrong when the medical condition in question is both deadly and very poorly understood by most laypeople. (Seriously–I’ve learned a ton about cancer these past few weeks that I never would’ve known otherwise.)

For example, someone literally tried to tell me that there’s doubt that a prophylactic mastectomy is effective for preventing breast cancer. But according to all of my doctors and all of the information I could find on reliable websites, people with a genetic predisposition to breast cancer can reduce their risk by 90% if they have that surgery. Because I have the BRCA-1 gene mutation, my risk of developing a second breast cancer within 15 years is otherwise 33%. (My lifetime risk of developing breast cancer at all was 55-65%. So yeah, I wish I’d known that and gotten the surgery years ago.)

So please do not give me advice that could literally kill me. Thanks.

5. Keep talking to us about your own life and problems.

A lot of times when someone gets diagnosed with a serious illness, people around them start feeling like they shouldn’t talk about their own (comparatively) less severe issues. Please do talk about them! I mean, obviously take your cues from the seriously ill person, but in my experience, it’s comforting to listen to friends vent about work or people in their lives or whatever. Checking in before/while dumping heavy stuff on someone is always a good idea whether they have cancer or not.

6. Resist the urge to relate our struggles to yours.

This is often an issue when someone’s talking about a shitty thing they’re going through, but when it comes to stuff like cancer, it’s especially relevant. The morning sickness you had during pregnancy is not like the nausea folks have during chemo. Your choosing to shave your head for aesthetic reasons is not like having your hair fall out because cells in your body are being destroyed. Choosing to get breast implants is not at all like having to have a mastectomy and reconstruction. And so on.

Sometimes, folks with other serious illnesses besides cancer do have very relatable experiences. (For instance, I met someone who has to have chemo because of a totally non-cancer condition.) Otherwise, just center the experiences of the person who’s going through the serious illness.

Note that I do not mean it’s wrong to simply say, “Ugh, yeah, I have nausea every day from my psych meds” or “That sounds a lot like me when I was pregnant.” Of course some cancer-related experiences are going to resemble some non-cancer related experiences.

Where comparisons fall flat is when you’re trying to comfort or reassure someone, or when they’re trying to talk about their cancer and you keep changing the subject to your pregnancy. If I’m terrified of reconstruction surgery, you’re not going to be able to reassure me by reminding me that some people (whose choices I respect but completely do not understand, by the way) choose to get implants, because that experience is going to be completely different.

7. Remember that most side effects of chemo are invisible.

Cancer patients often talk about the dreaded “chemo brain,” which is the shitty mix of mental fog, fatigue, and executive dysfunction that often happens during chemo. Just because we’re not vomiting or bedridden doesn’t mean we’re not experiencing some pretty serious side effects.

For me, this means having a lot of trouble with time management. Sometimes time seems to pass way more quickly or slowly than I would expect. I have a very hard time processing things like “when do I need to start getting ready in order to leave early enough to arrive at Thing on time.” I’m pretty much late to everything these days. The fact that I’m often so tired that standing up feels impossible doesn’t help.

I try not to keep anyone waiting for too long, but it helps a lot when people are able to be flexible.

8. Look for the less obvious ways to help.

When someone gets diagnosed with cancer, people usually gravitate towards the most obvious, visible ways to help: making meals, giving gifts, and so on. I also got tons of invitations to come hang out at someone’s place. However, the most helpful thing for anyone whose condition involves fatigue and needing to sleep, eat, or take medication on very short notice is offers to hang out near my home, not yours.

Even when people offer rides (which is very helpful, by the way), there’s always the potential discomfort of having forgotten my anti-nausea meds at home or desperately needing a nap or getting hungry in someone’s house and not knowing what to do or running out of tissues. I love offers to go to a restaurant or coffee shop near my place, or hang out at home.

A good question to ask someone is, “Is there anything you need that folks haven’t been offering to help with?”

9. Please don’t take it personally if we don’t take you up on your offers to put us in touch with your cousin/grandmother/friend-of-a-friend who has/had cancer.

Sometimes it’s helpful to talk to people who’ve been through it; sometimes it’s not. Regardless, that’s why support groups exist, as well as tons of one-on-one peer support services. I’m not really comfortable with calling a total stranger on the phone to talk about cancer, especially when it’s someone at least twice my age (which it often is).

Every cancer is unique, but the experience of young breast cancer patients in particular is often quite different from that of older people, because ours tends to be more aggressive and difficult to treat, and we tend to have less material/social resources and support than older survivors do. Many of the older survivors I talked to told me quite cheerily that they simply had surgery and were back to their normal lives soon after. That’s not at all how it’s going to be for me–I have to have chemo, then surgery, then possibly radiation, and then ten years of hormone blockers, plus being constantly vigilant for symptoms of ovarian cancer, which I’m also at increased risk for and which has no reliable early detection methods. Not super helpful to talk to people who didn’t have to deal with most of that.

10. Mind the boundaries.

There’s something about getting diagnosed with cancer, and talking about it openly, that makes some people assume that our relationship is much closer than it really is. It was weird to have people I barely know telling me that they hope I visit their city so we can hang out, or to offer help with stuff that’s honestly really personal and not at all a part of my life that I’d normally share with them. (For instance: decisions about my breasts and what to do with them.)

It’s true that there are certain boundaries that come down out of necessity when you’re going through a serious illness; for instance, my parents now know a lot more about my health, body, and lifestyle than they would’ve known otherwise. But that’s because my parents are my primary caregivers. They need to know that stuff in order to take care of me. You, random person who added me on Facebook because you like my writing, are not my primary caregiver. If you wouldn’t normally talk to me about my breasts or expect me to include you in my travel plans, don’t do it now, either.

11. Unless otherwise stated, assume that your gift/gesture is received and welcome.

In most situations, it’s rude not to reply with a “thank you” when you’ve received a gift from someone. When you’re newly diagnosed with cancer, it’s not. When people message me with “Did you ever get my package?” or “So was that hat I sent a good fit?”, the message I get is that I should’ve made sure to reach out and let them know that I received the gift and that I like it (whether or not I actually did like it), even when my days are a messy jumble of medical tests and treatments.

Personally, I take gratitude very seriously and I’m keeping a notebook of everything kind anyone does for me so that I can properly thank them later. (The key word there is LATER: when I’m not in the middle of chemo, probably.) But this isn’t something you should expect of your friend with cancer. This isn’t a normal situation, so normal rules of etiquette don’t apply. If you know that you wouldn’t be happy to give this gift or offer this help without the validation of a personalized thank you, don’t give it.

12. Assume that other people are doing what you’re doing. 

While that’s not always true, it can help you avoid doing things that are going to frustrate your friend or make their life more stressful. The previous suggestion is a good example—one person asking if I’ve received their package may be okay, but multiple people asking gets really overwhelming. One person asking for detailed instructions on how to knit me a hat isn’t that big of a deal, but providing multiple people with instructions for multiple types of knitted items is way too much.

“What if everyone behaved the way I’m behaving” is a great question to ask ourselves in many situations because it’s a reminder that it’s not just about you, and your gift, and your need to be helpful, and your anxiety that your gift wasn’t appreciated enough.

For me, there’s no such thing as too many cards and letters, or too many texts that say “No need to respond to this, but I love you and I hope your treatment is going okay.”

13. Decide what kind of support YOU want to offer, and offer it.

It’s a cliche by now that “Let me know if you need anything!” isn’t a super helpful thing to say (not that I mind it—I just take it literally), but the way to really grok that is to understand that most struggling people would rather you help in ways that YOU want to help rather than turning yourself into a put-upon martyr at our beck and call. That’s not a dynamic healthy people like.

Ask yourself what kind of help would bring you joy to offer, and what kind of help you’re good at giving. Do you like mindless household tasks? Cooking? Taking care of pets and plants? Organizing fun distractions? Being a workout buddy? Figure it out, and then offer that.

Of course, there are some tasks that need to be done even if nobody particularly loves doing them. (Some horrific things I’ve heard about post-surgery recovery come to mind.) But these tasks are for caregivers, not concerned friends. My parents will be the ones to make the noble sacrifice here, not you.

14. Comfort in, dump out.

It’s a classic for a reason.


As I’ve reflected more on what I find helpful and what I don’t when it comes to receiving support from people, it occurs to me that the most irritating, upsetting, or tonedeaf responses are also the ones that seem like they’re covering up something else. I don’t want to presume and play psychoanalyst with people (that’s from 8 to 5 and with pay only), but sometimes it’s pretty clear that the person I’m interacting with 1) doesn’t know how to react when a friend has cancer, 2) realizes on some level that they don’t know, and 3) is panicking about this.

“Can I knit you something? Do you need hats? What are your favorite colors? Do you care which type of yarn?” often seems to be masking “I’m worried about you and I have no idea what I could possibly do to help.” “So did you get my package???” is maybe actually “I sent you this thing without asking first if you needed it and now I’m feeling awkward because maybe you didn’t need it or want it.” Unsolicited medical advice often means, “Cancer terrifies me and I’m trying to believe that if I do everything right it will never get me like it did you.”

Again–not necessarily. Not all the time.

But the further I get into this whole ordeal the more it feels like honesty and openness is the way to go–just like it is in almost every other situation we find ourselves in. I would rather hear that you care about me than answer a dozen questions about exactly how you can help. I would rather one silly card with poor handwriting than The One Perfect Gift That Will Make All This Go Away–because that doesn’t exist.

Send the card. Offer the practical household help. We’re all gonna be okay.


Two great books for those interested in learning more: There’s No Good Card For This and The Art of Comforting.


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So Your Friend’s Just Been Diagnosed With Cancer

“How can you be both an atheist and Jewish?”

I get this question so often (especially online) that now you get an entire blog post just on this topic!

So, here’s how.

1) Judaism is a religion, but being Jewish isn’t necessarily.

Jewish people have at various times considered ourselves and been considered by others a faith, a nationality, an ethnicity, a race, and a culture. While the distinctions between some of these categories are blurry–and some of them are recognized mainly by anti-semites–that doesn’t mean they don’t exist.

For instance, the fact that groups such as Nazis and Soviets considered Jewish people a separate and inferior race has obviously had a huge effect both on Jewish history and on how many Jewish people see themselves. To use the obvious example, Hitler didn’t hate the Jews because they worshiped the wrong god or because they didn’t eat cheeseburgers; he hated them (among other reasons) because he considered them genetically flawed and therefore dangerous to his vision of a perfect Germany.

(Weird how Nazi types can never seem to decide if Jewish people are genetically flawed or genetically so fucking good at money shit that we literally run the whole world. It’s enough to give a Jew an identity crisis, for fuck’s sake.)

Anyway, Nazis and Soviets don’t get to define us–we do. And for many of us, the significant things about being Jewish have less to do with prayers and more to do with food, music, language, ethical values, history, overcoming oppression, bad jokes, holidays, drinking alcohol, arguing all the time, and so on.

Because Jews have historically tended to marry and have children with other Jews–not just for religious reasons but because non-Jews have typically wanted nothing to do with us–Jewish people are particularly susceptible to certain genetic abnormalities, and there are certain phenotypes particularly associated with Jewish people (i.e. My hair, olive skin color, and facial structure) just like there are with other ethnicities.

None of this means that all Jewish people are culturally, physically, or historically identical, and it’s extremely irritating when people use that as evidence against anything I just said. (It’s also extremely irritating that non-Jewish people feel the need to argue with anything I just said, period.) There are also distinct ethnic subgroups that evolved after Jewish people were expelled from the area now known as Israel/Palestine. The Ashkenazim, like me and my family, are the ones who ended up in Eastern Europe. The Sephardim settled in Spain and Portugal and were exiled from there in the 15th century. The Mizrahim hail from the Middle East and Central Asia. There are also smaller groups, such as the Beta Israel from Ethiopia and the Kaifeng Jews from China.

These subgroups differ in lots of ways, including language, customs, and religious observance. Ashkenazi Jews traditionally speak Yiddish, name their children after relatives who have passed away (this explains both my first and middle names), and pronounce Hebrew differently than other groups of Jews. Sephardi Jews traditionally speak Ladino (and potentially tons of other languages depending on where exactly they were from), name their children after living relatives, and sometimes face racism from their Ashkenazi cousins, which is bullshit, but there ya go.

I could go into a lot more detail about non-religious aspects of being Jewish, but that’s a good start.

2) Belief in god isn’t particularly central in most Jewish communities and practices.

If you’re not Jewish, you may not believe me if I told you that in my many years of attending Jewish services, celebrations, and events in a variety of different traditions and communities, the subject of any individual’s belief (or lack thereof) in god hasn’t ever really come up. But it’s true.

While Jewish prayers and texts obviously reference god copiously (usually with terms like “Hashem,” “Elohim,” “Adonai,” and other clever ways to avoid using god’s actual name which is forbidden), individual belief in god isn’t central to most Jewish conceptions of how to be a good person. That tends to focus more on doing good deeds, not breaking commandments, and generally not being an asshole. I say “most” because of that whole thing about two Jews, three opinions. Jewish rabbis and scholars disagree with each other on just about every single detail of Jewish history or practice, and while certain views get a lot more consensus than others, the idea is that you’re supposed to argue about it.

So while there are probably rabbis out there who would say that I’m a bad person–or even “not a Jew”–because I don’t believe in god, they are in the minority and you’d probably have to go to certain neighborhoods in Brooklyn or Jerusalem that I honestly try to avoid in order to find them. I’ve never had a rabbi take issue with my personal beliefs. I’ve never been questioned about my personal beliefs at synagogue, or expected to express or defend them. I have never had a Jewish person of any level of observance react negatively to finding out that I’m an atheist; many of them simply say that they’re atheists too. The one time I clearly remember telling a rabbi that I don’t believe in god, it simply led to a friendly debate in which the rabbi challenged me to explain the mathematical improbability of life on earth. (You may not agree that it’s mathematically improbable, but regardless, nobody told me I was going to hell.)

The vast majority of rabbis and other Jewish leaders that I’ve interacted with did not express or even show any sign of judgment or dissatisfaction with me about my beliefs or level of observance. They simply wanted me to participate to whatever extent I felt comfortable, because they liked seeing more young Jewish people get involved in the community and help it grow and improve.

3) Because I fucking said so.

Here I have to admit that I find it irritating as all heck when random people (usually on OkCupid, usually with a skeptical tone) ask me “how” I can be both Jewish and an atheist. First of all, it’s eminently googleable. Try it.

Second, even if all of that stuff I just wrote wasn’t a well-known and accepted viewpoint within most Jewish communities–why does it matter?

People identify how they identify. There are also many atheists from Muslim and Catholic backgrounds who still include that in their personal identity, although they usually call it “ex-Muslim” or “lapsed Catholic.” But that’s because Islam and Catholicism don’t have a long tradition of secularism dating back centuries. Within Islam and Catholicism, atheists don’t get a prominent voice. As far as I know, there are no secular mosques or churches within Islam and Catholicism. There are secular synagogues, and rabbis who lead them.

Point is, many people who were raised Muslim or Catholic but who no longer believe in god still identify with various aspects of those cultures, whether it’s giving up something difficult for Lent, celebrating Eid, or simply acknowledging that their upbringing affects them even today and that whether or not they believe in god, they still care deeply about their religious families or about issues facing those religious communities.

Religion isn’t the only category in which some people have complex and seemingly contradictory identities. There are bi dykes and lesbians who sometimes date men and nonbinary femmes and people who identify with different genders depending on the day and mixed-race folks who call themselves “Black” in certain contexts and “mixed-race” in others and asexual folks who have sex and biromantic homosexuals and homoromantic bisexuals and straight queers and married poly people and Jewish atheists. Sound confusing? Good! It’s not supposed to be simple.

Identity is complicated because humans are complicated. The vast majority of the times you feel like someone’s identity is contradictory, it’s probably because you’re defining words much more narrowly than they are.

If you think that “Jewish atheist” makes no sense, chances are you have a very narrow and ahistorical view of what it means to be Jewish (and probably what it means to be an atheist, too). Chances are I’m one of the first Jewish people you’ve ever really talked to about what being Jewish actually means.

And I get that. I do. But I’m getting pretty tired of having to justify an identity that feels obvious to me and to provide evidence of my own existence.

Every time I hear “but how can you be both Jewish and an atheist,” it feels extremely invalidating. The way this question is usually phrased implies strongly that the correct answer is “you can’t,” and that I’m somehow mistaken about one or both of these identities, and that you, a person with no Jewish background and clearly very little Jewish knowledge, know better than me.

Here’s a fact: polls and studies consistently find that about half of Jewish people are agnostics, atheists, or otherwise doubters of god’s existence. Less than half of Jewish people consider themselves “religious.”

Jews who openly question god or deny god’s existence are hardly unknown and include Carl Sagan, Stephen Jay Gould, Niels Bohr, Richard Feynman, J. Robert Oppenheimer, Franz Kafka, Isaac Asimov, Howard Zinn, Neil Gaiman, Stan Lee, Stanley Kubrick, Baruch Spinoza, Peter Singer, Noam Chomsky, Saul Alinsky, Hannah Arendt, Elie Wiesel, George Soros, Mark Zuckerberg, Sigmund Freud, Emile Durkheim, and Albert Einstein.

So I think I’m in pretty good company, and I don’t need to be corrected when I say that I’m a proud Jewish atheist.


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“How can you be both an atheist and Jewish?”

Selfishness is a Valid Response to Entitlement and Boundary Crossing

At first it sounded like a typical argument where my siblings are concerned.

Little Brother: “[Little Sister], give me your phone.”

Little Sister: “Why?”

“So I can take a photo.”

“Use your own phone.”

“Mine is out of battery. Give me yours.”

“No. That’s your own problem.”

“Give me your phone!”

“Noooooo.”

“Come on. I just want to take some photos. What’s the big deal? Just give me your phone.”

“I SAID NO.”

“Where is it?”

“It’s in Mom’s bag.”

[Little Brother looks for Mom’s bag, but she had taken it with her when she left to use the restroom.]

“Why did you leave it in her bag?”

“None of your business. It’s my phone.”

“You should’ve taken it out of her bag before she left.”

“It’s MY PHONE.”

[Mom arrives.]

“Mom, give me [Little Sister]’s phone so I can take a photo.”

“NOOOOOOOO”

Mom jumps in: “What’s wrong with you? He just wants to take a photo. Why are you being so selfish?”

“I just…I don’t want him to use up all the battery…he shouldn’t have used up his whole phone charge on Pokemon Go…”

“But he’s only going to use it for a few minutes!”

On and on it went.

If that’s all you heard, you might assume that my sister really is a petty and selfish person. Is it that hard to lend your phone to a family member for a few minutes so they can take a photo of a beautiful sunset?

What you wouldn’t know is that my sister is in fact a remarkably selfless and caring person. When it’s me or our parents asking, she never hesitates to help us out, lend us some of her very limited money when we’ve forgotten to bring cash, provide words of support that sound remarkable coming from an 11-year-old, give fashion advice, join in our joys even when she personally doesn’t care about the thing we’re happy about, and ask if we’re okay when we seem like we’re not.

Leaving aside the fact that it’s still her phone and she still gets to decide who gets to use it and for what–a very important fact that I’m only leaving aside because I’m writing about something else–our brother has a pattern of entitled, demanding behavior towards her. He treats her time, belongings, and energy as if they’re his to take. Unfortunately, that happens a lot to selfless and caring people.

Because of that pattern, my sister has stopped being as giving with our brother as she used to be. Often she angrily refuses to do even tiny favors for him, like letting him borrow her phone for a few minutes to take some photos. Occasionally he makes his requests in a more appropriate way, but sometimes she still reacts with knee-jerk irritation and, raising her voice, tells him no.

Watching the argument unfold, I couldn’t help but remember myself in some of my past relationships. Only I wasn’t being asked to lend a phone or fetch something from the kitchen; I was being asked for emotional labor, for support, for validation, for “can you just remind me again that you really do like me,” for “can you please explain to me again why you’re not interested in [sex thing] because I mean it’s fine that you don’t want to do it but I just want to understand.”

At first, I gladly provided what was asked for, even though, if I were really honest with myself, I’d admit that I didn’t always like the way the requests were made. But over time, the quantity of emotional labor expected was just too high, and–more importantly–I felt that my partner felt entitled to it. Although they would never be so obvious about that entitlement as my younger brother was in his–they’re much too well-versed in feminism for that–in other ways, subtle ways, they made it clear that they considered that labor to be my obligation as a partner and that if I couldn’t or wouldn’t provide it, I was doing something wrong.

Once I realized that my partners thought that it was my job to do emotional labor for them, I started rapidly losing the desire to do it. I started saying no more often, although I was never as blunt about it as my sister is. I would say, “I’m sorry, I’m not in a good place to listen right now.” (True.) I would say, “We’ve already talked about how you feel like I don’t really like you and you’re not good enough for me, and I don’t think there’s anything else I can do to make you feel otherwise.” (I didn’t add that they were well on their way to turning it into a self-fulfilling prophecy, though.) I would say, “I already explained that to you. If that explanation didn’t suffice, another one won’t help.”

Even now, even to myself, I sound selfish and cold. But so does my sister, out of context. Neither of us is selfish or cold. What we are is exhausted. What we are is tired of being unable to set any boundaries. What we are is totally done doing things for people who have never, ever asked us what we need.

And before you judge either of us as selfish based on a few snippets of conversation, ask yourself what could happen to make someone act and talk that way.

When someone’s reserves of compassion get drained like that, they start setting boundaries that are much stricter and tighter than what they would’ve been otherwise. No, you can’t borrow my phone for even a few minutes. No, I don’t want to listen to your feelings at all. No, I honestly don’t even have enough emotional energy to give you a compliment to make you feel better about yourself.

That slow draining away of compassion is so hard to notice and understand that many of us don’t even realize what’s happening or why. When pressed for explanations, especially couched in language that naturally makes us feel defensive–“Why are you so selfish?” “Why don’t you even care enough to ask me about my day?”–we stumble around in the dark until we think we’ve found something. “I don’t know, I just don’t want him to use up my phone battery.” “I’ve just been having a hard time lately.” “I guess I just don’t want the kind of relationship where we support each other all the time and talk about stuff like that.” (Oh, how false that last one turned out to be. I’m in a relationship like that now and it’s wonderful.)

Asking people questions that start with the word “why” is dangerous precisely for that reason–it puts them on the spot and forces them to come up with an explanation (not all of us are comfortable answering “I don’t know” to a question about our own internal processes, even though that would be the honest and accurate answer). The confabulation that often results is rarely intentional or conscious. Unless someone already has a clear and self-aware understanding of their actions–not likely in emotionally charged situations like this–“why” questions are more likely to hurt than help.

Maybe in that moment, my sister really did feel that she was worried about her phone’s battery draining. When our irritated mom demanded an explanation, her brain helpfully supplied one. But I wouldn’t be surprised if the real answer was that…she just didn’t want to. She really, strongly didn’t want to. Because others’ entitlement often shuts down our desire to help them, and when we’re constantly afraid that our boundaries will be ignored, one strategy that many of us feel compelled to use is to start loudly, bluntly stating and defending those boundaries, as if to remove any plausible deniability from the person who continually crosses them.

Believe me, I’ve seriously considered the possibility that I’m just selfish. I even bought into it for a long time, until I got into some relationships where I’m able to give gladly of myself and where I find that the more I give, the more I want to give. Yes, with certain partners I got to the point where I couldn’t bring myself to even the smallest act of emotional labor (at which point those relationships obviously collapsed). Yet with others I would drop what I’m doing to bring them food when they’re sick or listen for hours to their worries.

What’s the difference? No, it’s not How Much I Like Them; I was head over heels for all of them at some point, and besides, I often do lots of emotional labor for people who are practically strangers. The difference was entitlement. When people act entitled to emotional labor from me, I stop wanting to do it. When they treat my emotional labor as an act of love that I get to choose to give, I want to give it more and more.

These days I’m not optimistic about rescuing relationships that have broken down to such a point. If every request for emotional labor that your partner makes causes you to feel overwhelmed, irritated, or angry, then that relationship isn’t working out. If your partner is refusing every request for emotional labor no matter how respectfully and non-entitled-ly you make it, then that relationship isn’t working out. I don’t know whose “fault” it is and it probably doesn’t matter. But if you’re more optimistic than I am, I suggest getting counseling as a couple. Otherwise, things tend to devolve counterproductively into “Well, you’re just selfish and never want to do anything for me!” and “Yeah, well, you ask for too much and act entitled to it!”

These days I’m also trying not to label myself with negative character traits. Personality is fluid and entirely context-dependent. Some people bring out the worst of my selfishness; some people bring out the best of my selflessness. I’d rather be involved with the latter people.

All relationships are, in one way or another, built on emotional labor. When my roommate listens to me vent about my workday and I feel supported, that’s emotional labor. When my mom is worried about a sick relative and I worry with her and make her feel less alone, that’s emotional labor. When I pick out a present for a partner that’s exactly what they wanted and it makes them feel closer to me, that’s emotional labor.

But none of these things mean anything if they’re forced, if you feel like the other person will resent you for not doing them. If saying no isn’t a real option, then the yes is meaningless. (That applies to way more than just sex.)

My sister and I have in common a fierce and uncompromising selfishness towards people who cross our boundaries and demonstrate entitlement. I’m trying to stop beating myself up for that, and I hope she takes my example.


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Selfishness is a Valid Response to Entitlement and Boundary Crossing

Social Media, Mental Illness, and Vulnerability

“Wow, uh…you’re very open online.” I still hear this from people every so often.

“Yup,” I say, because I don’t assume it was meant to be a compliment.

And it’s true. On my Facebook–which, by the way, is not public–I’ve posted regularly about depression, anxiety, sexuality, sexual harassment and assault, body image issues, interpersonal problems, and other various struggles, big and small, that make up life. Don’t get me wrong–I also post plenty about food, cute animals, books, and other “appropriate” topics for online discussion, although I’ve noted before that there really is no way to win at social media (including refusing to play at all).

People who don’t know me well probably assume I do it “for attention” (as if there’s anything humans don’t do for some sort of attention, one way or another), or because I’m unaware of social norms (they’re not that different where I come from, trust me), or simply because I have poor impulse control. Actually, I have excellent impulse control. I’m not sure I’ve ever acted on impulse in my entire life, with perhaps the sole exception of snapping at my family members when they get under my skin. I know plenty of people who have destroyed relationships, lost jobs, or gotten hospitalized as a result of their impulses. I get…speaking rudely to someone for badgering me about my weight.

Being open about myself and my life online (and to a certain extent in person) is something I do strategically and intentionally. I have a number of goals that I can accomplish with openness (or, as I’ll shortly reframe it, vulnerability), and so far I think it’s worked out well for me.

A lot of the good things about my life right now–and, yes, some of the bad–can be traced back to a decision I made about five and a half years ago, when I was a sophomore in college. I had recently been diagnosed with depression and started medication, which was working out great and had me feeling like myself for the first time in years. (Yeah, there were some horrible relapses up ahead, but all the same.)

I wrote a very candid note on Facebook–later a blog post–about my experience and how diagnosis and treatment had helped me. At the time, I did not know anyone else who was diagnosed with a mental illness–not because nobody was, but because nobody had told me so, let alone posted about it publicly online. While I obviously knew on some level that I wasn’t “the only one,” it felt that way. I certainly didn’t think it would be a relevant topic for my friends. Mental illness was something experienced by Other People and by weird, alien me, not by any of the happy, normal people I knew.

I couldn’t have been more wrong. In response to my post, tons of friends started coming out of the woodwork–both in private messages and in the comments of my post–and talking about their own experiences with mental illness. An ex-boyfriend texted me and apologized for dumping me years prior for what he now knew was an untreated mental illness. Acquaintances and classmates turned into close friends. Circles of support were formed. I started speaking out more and gradually became recognized as an advocate for mental health on campus, and eventually started a peer counseling service that is still active on campus today, three years after I left. These experiences pushed me away from the clinical psychology path and towards mental health services, leading me to pursue internships, my masters in social work program, and now, what looks to be a promising career as a therapist.

All because of a Facebook post that many would consider “TMI” or “oversharing.”

Well, not all because. I don’t know what path my life would’ve taken if I’d made different choices, not just with coming out as a person with depression but with all kinds of things. Maybe I’d still be here, or somewhere similar. But I can’t possibly know that–what I do know is that the decision to make that Facebook post had very far-reaching and mostly positive effects on my life.

This isn’t a “you should come out” post; I don’t do those. I’m writing about myself and why I’m so open. This experience, and others that followed, shaped my perspective about this. So, here’s why.

1. To be seen.

That’s my most basic reason and the one that comes closest to being impulsive. But basically, I don’t like being seen as someone I’m not. I don’t like it when people think my life is perfect because I only post the good things. It hurts when people assume I have privileges I don’t, and when people think I couldn’t possibly need support or sympathy because everything is fine. If I didn’t post about so-called “personal” things,  people would assume that I’m straight, neurotypical, and monogamous, and the thought of that is just painful.

2. To filter people out.

I don’t expect everyone in my life to support me through hard times or care about my problems. Some people are just here for when I’m being fun and interesting, and that’s only natural. However, posting about personal things on Facebook is a great way to filter out people who not only aren’t interested in supporting me, but who are actually uncomfortable with people being honest about themselves and their lives. Otherwise, it’s going to be really awkward when we meet in person and you ask me how I’m doing and I say, “Eh, been having a rough time lately. How about you?” Because I do say that. Not with any more detail than that if you don’t ask for it, but that’s enough to make some people very twitchy because I didn’t perform my role properly.

I don’t want anyone in my life who thinks it’s wrong, weak, or pathetic to be open about your struggles. Because of the way I use Facebook, they don’t tend to stay on my friends list for long, and that’s exactly how I want it.

3. To increase awareness of mental illness.

When I post about my experiences with depression, anxiety, and eating disorders, it’s not just because I want people to know what’s going on with me personally. I also want them to know what mental illness is. When I published that post about depression I mentioned earlier, I didn’t just get “me too” responses–I also got comments from people who said that they’d never had depression and struggled to understand what it’s like, but that my piece helped. Some people took that knowledge and applied it to their relationships with depressed friends, partners, and family members, which I think is great.

It seems weird to write this section now, because so many people in my life have themselves been diagnosed with mental illness or are very knowledgeable about it through supporting others with it. But when I first started being open online about depression, that definitely didn’t describe my social circle, and I’d like to think that my openness is at least part of the reason for the difference.

4. To reduce the stigma of mental illness.

I don’t just want to make people aware of what mental illness is like–I want them to stop thinking of it is a shameful thing that ought to be kept secret. Since I’m fortunate enough to feel safe coming out, I think that’s a powerful action I can take to reduce that stigma. The more people see my posts about depression and anxiety as normal, just like posting about having the flu or going to the doctor, the less they’ll stigmatize mental illness.

Of course, stigma–and the ableism that fuels it–is a broad and systemic problem with intersectional implications that I don’t even pretend to be able to fix with some Facebook posts. But I do what I can.

5. To reduce the stigma of vulnerability, period.

Not everything “personal” that I put online deals with mental illness specifically (although, when you have lifelong depression, everything does tend to come back to that). I write a lot about homesickness, my love for New York (and the pain of leaving it), issues with my family, relationships, daily frustrations and challenges, and so on.

Not everyone wants to share these things with their friends (online or off), but many people do–they’re just afraid that nobody cares, that they’ll be seen as weak, or that there’s no room for this kind of vulnerability within the social norms that we’ve created. That last one may be true, but there’s no reason it has to stay that way.

As Brené Brown notes in her book that I recently read, vulnerability isn’t the same thing as recklessly dumping your personal problems on people. I’ve also written about guidelines for appropriate sharing, and how to deal when someone’s sharing makes you uncomfortable.

The point isn’t to completely disregard all social norms; some of them are there to help interactions go smoothly and make sure people’s implicit boundaries are respected. The point is to design social norms that encourage healthier interactions, and while I’m sure there are some people who can healthily avoid divulging anything personal to their friends, I’m not one of them and my friends aren’t either. So for us, reducing the stigma of vulnerability and encouraging openness about how we feel is healthy.

6. To create the kinds of friendships I value. 

Being open online doesn’t just filter people out–it also filters people in. Folks who appreciate vulnerability read my posts, get to know me better, and share more with me in turn. I’ve developed lots of close friendships through social media, and not all of them are long-distance. In fact, a common pattern for me is that I meet someone at a local event and chat casually and then we add each other on Facebook, at which point we learn things about each other that are way more personal than we ever would’ve shared at a loud bar or party. Then the friendship can actually develop.

I’ve been very lucky to find lots of people who appreciate this type of connection. People who don’t always answer “how are you?” with “good!”, who engage with “negative” social media posts in a supportive and productive way rather than just ignoring them or peppering them with condescending advice or demands to “cheer up!” People who understand that having emotions, even about “silly” things, doesn’t make you weak or immature. People who understand that working through your negative/counterproductive emotions requires first validating and accepting them, not beating yourself up for them or ignoring them.

So, that’s why I’m so open online. If you don’t like it, you don’t have to read it. But I’m not alone in it, and it’s becoming less and less weird. It’s hard to believe that just a few years ago, I was the only person I knew with depression. Not only do I now know many, but I’m also so much more aware of all sorts of joys and sorrows I haven’t personally experienced–all thanks to my friends’ openness online. For a therapist–hell, for a human being–that’s an invaluable education.


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Social Media, Mental Illness, and Vulnerability

Brute Reason is Going Comment-Free

I am closing comments on this blog until further notice.

I’m not writing this because I think that needs justification. I’m writing this for the sake of my own clarity, to help me decide if/when I want reopen comments, and to empower other bloggers who are considering a similar decision.

Otherwise, I don’t have to justify my decision because I don’t owe you a comments section any more than I owe you access to my living room. I don’t owe you anything other than I owe anyone else: basic kindness and respect.

I’m sure you’re wondering what awful harassment and rape and death threats I’ve gotten recently that made me come to this decision, but the reality is a lot less dramatic. I rarely get harassment and threats these days. When I did, it was horrifyingly unpleasant and scary, but it ultimately did less long-term damage than the actual reason: boring everyday online negativity and nitpicking.

Continue reading “Brute Reason is Going Comment-Free”

Brute Reason is Going Comment-Free

Frivolous Friday: Adventures in Ice Cream Making, Part 1

Frivolous Fridays are the Orbit bloggers’ excuse to post about fun things we care a lot about that may not necessarily have serious implications for politics or social justice. Although any day is a good day to write about our passions outside of social issues, we sometimes have a hard time giving ourselves permission to do that. This is our way of encouraging each other to take a break from serious topics and have some fun.

Last New Year’s, my parents gave me an ice cream machine as a gift. Ever since, I have been an unstoppable force of dessert creation. There’s almost always some in my freezer, because even though I love ice cream, I love it in pretty small amounts. The fact that there is usually so much of it in my freezer is a fact that few people other than my roommate have known…until now.

Ice cream making sounds like kind of a complicated process, and it is–but it’s easy. The first step is to obtain an ice cream machine. Mine is one of the (relatively) cheaper ones and it works just fine unless you want to make massive quantities of ice cream. All an ice cream machine does is churn the ice cream base while also freezing it so that it’s neither a solid hunk of ice nor a liquidy mess.

Making ice cream usually consists of four steps:

  1. Combining the ingredients (this often involves simmering a bunch of dairy products and adding stuff to them)
  2. Chilling the ice cream base (if you don’t do this, it won’t work)
  3. Churning the base in the ice cream machine (and, sometimes, adding stuff like nuts or chocolate chips)
  4. Freezing the ice cream (like, in the freezer) for at least a few hours

I haven’t started creating my own recipes yet, so I just basically do what the recipe says. 😛

When it comes to chilling the ice cream base, you can either put it in a sealed container and put that in the fridge for about four hours. Or, if you’re impatient like me, you can fill a big bowl with ice and cold water, pour the base into a gallon-size ziploc bag, seal it, and let it hang out in the bowl for a while until it’s pretty cold. The ziploc bag also makes for a pretty convenient way to pour the mixture into the ice cream machine.

Another smart thing to do is to make sure that when you put the churned ice cream into the freezer to finish freezing, you cover it with parchment paper first. I usually pour the churned ice cream into a tupperware, press the parchment paper onto the surface of the ice cream, and then close the container. The paper prevents those awful ice crystals of doom that have ruined every container of Ben & Jerry’s I’ve ever had.

I got to break out my ice cream machine for the first time a few days after I got it, at New Year’s Eve. I was throwing my first-ever NYE party, Russian-style. (The art of the Russian dinner party is definitely a topic for another Frivolous Friday post.) I decided that rather than normal champagne, I wanted champagne sorbet floats, because why the fuck not.

Continue reading “Frivolous Friday: Adventures in Ice Cream Making, Part 1”

Frivolous Friday: Adventures in Ice Cream Making, Part 1

The City in Her Flowers

Washington Square Park, spring.
Washington Square Park, spring. I walked this way to work from the subway every day.

At first I didn’t understand why New York has been on my mind so much lately, even more than usual.

It’s been almost seven months since that awful weekend I spent there, packing up my stuff to leave for good. It’s been ten months since I left it to spend the summer in Ohio with my family, expecting at the time that I’d soon be back.

Things here have been as good as they’ve ever been, and truly, they’ve always been good. Not a day has gone by that I haven’t paused at some point to think about how lovely my life in Columbus is. It’s not just the individual components that make up a good life–my friends, my partners, my family, a decent job, a nice place to live, interesting things to do, and so on–it’s the way my entire mental structure seems to have shifted shortly after moving here. I became less cautious, more optimistic, more able to connect with people, more willing to give to them, more willing to accept what they have to give. I’m able to treat challenges as learning opportunities. I’m genuinely curious about the future. I think I will generally succeed at things and accomplish what I set out to accomplish, and those are all very new abilities for me.

I never expected that leaving what I love most could be so good for me.

I think I know why I keep thinking about it. It’s undeniably spring now, and the warmth and sunlight and flowers naturally remind me of the last time it was spring, and where I was at that time. In a way I think I will always remember New York by its spring, same way you remember your ex in the dress she wore on your last night together.

My city’s dress was all flowers, and her hair was sunshine on skyscrapers.

Nothing about my feelings made any sense until I started thinking of New York as an ex. You might love an ex but leave them anyway. You might miss your ex but know it’s best for you to stay away. You might regret leaving them, but, what’s done is done and you’re with someone else now and living your own life and that’s good enough for you. I left New York out of necessity, but I’m staying away–I think–because I want to.

Since coming to Columbus, I’ve started my first Real Adult Job and kicked ass at it. I’ve started dating people who actually live locally and it’s been amazing. I’ve started performing burlesque. I’ve started biking regularly again. I’ve started making my own ice cream and subjecting my friends to it. I’ve (re)started hosting big dinner parties like I used to, before New York with its tiny kitchens. I’ve started getting involved in all sorts of local groups. I’ve started playing in a community band–a queer community band. (I can’t even express how excited I am to be marching in a Pride parade for the first time this summer.) I’ve started making peace with my own weird form of queerness. I’ve gotten over my anxiety about driving and making phone calls and going to events where I don’t know anyone (but, unfortunately, not about dating). I’ve met more people and gone to more events and seen more cool things than I could even try to list. My family, to whom saying goodbye used to completely break me every time, is now a mere hour down the highway and I see them all the time, and the fact that my little siblings no longer cry when I leave at the end of a visit feels like it means more to me than a thousand New Yorks. And yet.

And yet, and yet, and yet.

“New York it is not,” I say to myself, biting into a bagel with lox, eating a bowl of ramen, entering a used bookstore, walking down High Street, shopping for clothes, watching the skyline grow on the horizon. It’s kind of like everyone knows you’re not supposed to compare your partners to your exes and everyone does it anyway. This is not a city you fall in love with and do desperate things for; this is a city you learn to love because it’s the city that’s there.

And yet it’s precisely in its not-New-Yorkness that Columbus comforts, delights, and ultimately captures me. It’s the ten-minute drive home from work to my comfortable apartment with a kitchen big enough to actually cook in. It’s reading on the couch and hearing the rain through the open window. It’s the long bike rides through woods waking up from winter as if from a dream. It’s the way people here bring you into their circle, a phrase my mom uses in Russian that seems to mean not just including someone in your social group but letting them into your life. It’s falling asleep to the whistling of trains and waking up to the singing of birds. It’s 5 PM on Friday and all the promise that it brings. It’s Saturday night at a bar with a partner, running into people we know and catching up. It’s having a calendar so overflowing with burlesque shows and dinner plans and comedy nights and yoga classes and happy hours and band rehearsals and activist meetings that I barely have time to think about what I’ve lost.

Yet think about it I do, in those spaces between one thing and another, in the car, in the shower, in bed, in line. I’ve thought about it every single day since I left. I’ve thought about it so yearningly, so painfully, so viscerally, like I’ve never thought about any person, or really any thing, before.

In those moments, it’s like I’m still there. The metallic smell of the subway tracks, the screech of the train, the rush of wind around a corner, the architecture of all my favorite places, the exact taste of a proper slice or bagel or bowl of ramen, the softness of the Central Park lawn beneath my bare feet. The way I felt when I showed the city to my best friend and fell in love with them both all over again. The way I felt on New Year’s Eve. The way I felt sipping too-hot tea in my aunt’s apartment on a cold night, more times than I can count. The way I felt on my last night in the city, taking a few steps into that same apartment before collapsing, sobbing, in my aunt’s arms. The way I felt coming up the subway stairs into the light. The way I felt when I was so connected to the city that it was like its pulse was my pulse. The way I felt when it seemed like the city was all I had. The way I felt when I drove over the bridge into Manhattan for the first time, to stay. The way I felt when the bus emerged from the tunnel in New Jersey, the sun setting over the city for the last time.

At their best these memories are a nice distraction from daily life, but at their worst they haunt me. I even had a dream a few nights ago that I was still there, in a subway station, trying to find the downtown C and failing. I woke up angry. I always knew how to find the right train. I am terrified of coming back and finding that my mental geography of the city has faded and frayed so that I can’t do something so simple as finding the downtown C, let alone remembering how to get to Broadway from any given point.

Sometimes I think that New York is the closest thing to a romance I’ve ever had. I’m not given to thinking about other human beings in those terms; while I’ve loved many people, I’m not sure I’m capable of being in love with anyone for longer than a few days. People are wonderful but they’re indecisive and undependable. A city will always be waiting for me, which is probably exactly why I can’t seem to move on. How do you move on from something that can’t move?

I’m not so simplistic in my thinking as to assume that any of this means that I’m unhappy here, that this isn’t “the right thing,” that I should definitely go back, that whatever. I know I’ve never, ever been as happy as I am now and I’m not about to fuck with that because of a weird obsession with a city I ultimately only got to stay in for two years.

And maybe it’ll get better once spring is over and merely stepping outside stops reminding me of my last days there. Summer was always for Ohio, and I think it’ll help me feel more grounded in where I am rather than floating around in memories of where I once was.

But right now it’s particularly hard. I close my eyes and all I see is the city in her flowers, the city in her sunshine.

Central Park, spring--probably my last time there.
Central Park, spring–probably my last time there.
The City in Her Flowers