I can’t turn it off

At dinner the other night, after a couple beers:

Boyfriend: Okay, random question time.
Me: Shoot.
Boyfriend: If you could be teleported to any restaurant in the world, where you could have dinner, and you would be teleported immediately back, where would you go?
Me: Hmmm, this is a tough one.
Boyfriend: So you don’t have to worry about travel to or within that country.
Me: Do I have to actually be able to get into this place? Or can I like, teleport into French Laundry and they’re required to feed the person who just appeared?
Boyfriend: …Let’s say you have enough time to make reservations, but you still have to be able to get the reservations and afford the meal.
Me: Okay, so not French Laundry. ………..Honestly, probably some seaside restaurant in Italy.
Boyfriend: Not somewhere in Asia? Or the Middle East?
Me: I’m not really sure if I want to go to the Middle East…
Boyfriend: Okay, just what food would you want to eat? Let’s also say you have a magic forcefield that makes you look like a male.
Me: I like how I can suspend disbelief for teleportation, but sexism? Nope.

All I can say is thank goodness I found a man gets a laugh out of my overthinking.

Where would you go? Same rules as above apply, including magic forcefields to make you have the most privilege possible in the local area.

Her (recent) conference assault

Ashley Paramore has released a much-watch video about her recent conference assault at the 2012 Amazing Meeting in Las Vegas. Sadly, the adjective “recent” is necessary since this is hardly the first or second or third time Ashley has had this unfortunate experience at one of the many atheist and skeptical conferences she has attended.

Thank you, Ashley, for sharing this. She goes more in depth about this in the video, but speaking out about harassment and assault is difficult. If you’ve been paying any attention at all to… well, the internet over the last couple of years, you know the kind of horrible treatment that women get for speaking out about these things. When she was employed within the atheist movement, she was too worried that speaking out about her assaults would negatively affect her job and future job prospects. Thank you for having the strength to speak up now.

And I also have to thank the JREF for handling her situation well. They’ve received a lot of flack lately, but I have to give credit where credit is due.

Hopefully this video and the harassment policies that have been implemented across cons will help more women feel safe to speak about their experiences and make atheist spaces safe spaces.

Paid vacation and graduate school

No, the title isn’t meant to be a punchline.

I was reading an article about the United States’ abysmal paid vacation and holiday policies. What makes them so abysmal is that they don’t exist. A study from The Center for Economic and Policy Research explains:

The United States is the only advanced economy in the world that does not guarantee its workers paid vacation. European countries establish legal rights to at least 20 days of paid vacation per year, with legal requirements of 25 and even 30 or more days in some countries. Australia and New Zealand both require employers to grant at least 20 vacation days per year; Canada and Japan mandate at least 10 paid days off. The gap between paid time off in the United States and the rest of the world is even larger if we include legally mandated paid holidays, where the United States offers none, but most of the rest of the world’s rich countries offer at least six paid holidays per year.

I really encourage you to read the rest of the article if you’re interested. It addresses things like the paid vacations given by employers (they still suck compared to other countries) and how it breaks down depending on your pay level (poor people get screwed, what a shocker). It baffles me why employers wouldn’t want to make their employees happy, since happy employees are more loyal and productive and ultimately benefit a business in the long run. Everyone wins!

As someone who has been a perpetual student her whole life, I’ve never really experienced a “real job.” Working minimum wage at a golf course doesn’t seem to count for this discussion, since I didn’t have any benefits. But grad school has its own unique situation when it comes to things like paid leave, partially thank to the weird student-employee limbo it puts you in.

Other programs may work differently, but I’m paid on a stipend through a fellowship from the National Science Foundation. What that means is I get a paycheck deposited into my bank account every 2 weeks no matter what. It doesn’t matter if I’ve worked 80 hours or 8, if there were national holidays, if I took a vacation, if I got sick, etc.

It’s both a blessing and a curse.

The blessing part is obvious – I get paid no matter what. The potential problem is that because of this lack of regulation, workplace standards are basically up to your adviser’s whim. My adviser happens to be extremely hands-off and doesn’t care what hours you’re in lab, if you’re working from home, or if you’re taking vacations. He just cares that you’re getting good work done, even if that takes less than 40 hours a week because you’re efficient. He allowed a grad student to work from abroad a month at a time because she was in a long distance relationship and her work was purely computational. You don’t have to approve vacation times with him ahead of time, or even really warn him about it . He expects you to be motivated enough to manage your own schedule and only take vacations if you think you can. So when I wanted to see the Postal Service play in Portland last Wednesday, it was no big deal to take a day off in the middle of the week. The downside to all of this is that our lab tends to get empty thanks to our random hours not really overlapping, and sometimes I wonder how long it would take him to notice I was gone if I dropped dead.

But the curse is more obvious if you have a more stereotypical, demanding professor. From talking to other grad students, the following experiences seem all too common. Many professors expect you to work weekends and put in more than 40 hours a week despite us not having paid overtime, arguing that’s just how grad school is. If your vacation request isn’t outright rejected, expect emotional manipulation to try to guilt you out of it. You’ll be compared to “harder working” grad students and be told “this is just how things work in academia.” Your desire to want your job to be treated like a job will risk you getting labeled as unmotivated and not willing to make sacrifices in the name of science. You’ll worry that attempting work-life balance will lose you that letter of recommendation, regardless of the quality of your research. Yeah, maybe what you did was excellent, but you could have always done more.

PhD comics by Jorge Cham

Regardless of the type of professor you have as an adviser, there’s another element to the curse: Without set hours and policies, you feel like you’re always working. Your research never stops. You may have headed home for the night, but you’re still thinking about how your experiment went wrong or what analysis you can do next. You feel obligated to read another paper or keep working on that code you couldn’t debug during the day. There’s always something more you could be doing with your project. But when you feel like you’re working every minute of the day with no reprieve, you become exhausted. It’s harder to focus when you’re actually at work because you’re burnt out. And that in turn makes you feel guilty for not working hard enough, so you keep working when you’re at home, which makes you exhausted…etc, etc, cycle of doom.

But without set policies, it’s difficult to set a regular schedule. Having “sick days” you can use lets you know its okay to take off work when you’re sick, instead of feeling guilt to come in or keep working from home. Having “vacation days” encourages you to actually take time off for your physical and mental well-being instead of burning out from feeling required to work 24/7. Some people are great at self imposing work restrictions, and I think that’s often a key to success in academia. It’s still something I’ve yet to figure out, and its made more difficult by the “You Must Always Be Working And Only Care About Your Science” mentality that grad school promotes.

Unfortunately that mentality is pervasive through academic culture. You see it when academics tell students they shouldn’t care where their postdoc or faculty position is located because they should just be happy they have a job. They should be nobly pursuing SCIENCE; the fact that the job is located in a place that makes them miserable or separates them from a significant other should be irrelevant.

I’m certainly not trying to say grad students have it the worst. With the right adviser and self control, we can have amazing flexible schedules that don’t drive us crazy. I’d say I’d wish grad school was treated with the same standards as a “real job,” but then I remember the sad facts I presented at the beginning of this post. Many Americans don’t get paid vacations at all. Even when paid sick leave is required, employers don’t necessarily give it. And all of this isn’t even getting into bigger workers issues like minimum wage vs. living wage, or wage theft, which arguably also happens to graduate students in the form of required student fees. In what other job would it be acceptable to have to pay 5% of your salary to keep being employed?

I guess I have to keep things in perspective. At least I don’t work for Walmart.

No atheists in Intensive Care Units

One week had passed since I flew out to be with my mom. Our spirits were high thanks to recent progress – my mom had woken up, seemed to have all of her mental faculties and remember who we were, and was just getting enough strength to communicate by pointing at letters on a board. The fact that those things sounds so insignificant should tell you just how bad things had been.

My dad and I were going through our new routine – sitting next to my mom in the ICU while she slept. We kept pretty quiet to try to not to disturb her, since good sleep in the ICU was rare. This unit was grandfathered in, which meant there were no walls between patients despite that being the new regulation. And I can see why that regulation passed. Machines beeped and droned constantly. Visitors yacked loudly on cellphones making personal calls (against a rule that apparently no one would enforce). But the worst was when something was going wrong. One patient tried to tear out all of his tubes while swearing up a storm and thrashing around the unit. Even more disturbing was when nurses would swarm a patient when something was going terribly wrong.

It wasn’t a good place for the kind of peaceful rest you need after you almost died.

But since my dad and I were trying not to make my mom’s space any noisier than it already was, we mostly sat and listened. And I’ll always remember one of the conversations we silently listened to, only communicating with each other through mutual eye rolls.

A man had been admitted in the bed next to my mom for triple bypass surgery (yes, you hear that much detail and more – if I had been taking notes I could have told you his whole medical history and current medications…so much for medical privacy). It seemed to have been pretty routine and uncomplicated – he had been wheeled out and back and was pretty much instantly looking back to normal. He was immediately eating solid food while resting in his lazy boy. To put things into perspective, my mom had just been given her first nutrient IV bag after almost a week of no food at all, and still couldn’t stand.

The man called a nurse and she promptly came to help him with what he needed. He said to her, “My brother says if you thank nurses, you get better service. So I guess I should say thank you.”

The nurse looked at him incredulously for one moment before squeezing a “you’re welcome” through gritted teeth.

I was kind of stunned. Who thinks that way? You think the only reason you should be polite and thank someone is because you selfishly want better service? You know, not because that nurse was part of a team that saved your life? More so, who says that out loud without realizing how incredibly rude it is?

It irritated me, but I tried to ignore it. Maybe he was hopped up on drugs or something. Maybe he was just a jerk. Whatever. I didn’t need to worry about him because I was just happy my mom was alive. (And to illustrate one of the reasons I love my mom: After she was able to communicate clearly through writing, she overheard the nurses placing an order for their dinners over the phone, and she tried to insist that we pay for her nurse’s meal since she had been taking such good care of her all week. The nurse politely declined, but that’s the kind of lady my mom is – even in sickness she’s thinking about others.)

Pretty soon his family filed in to visit. My irritation returned because the conversation for the next couple hours can be summarized as “Praise Jesus and the power of prayer for this successful surgery.”

Excuse me? Praise Jesus? Praise prayer? This coming from the same guy who only thanked his nurse because he wanted better service? Yes, let’s snub the human being who was instrumental in your medical care and instead pat ourselves on the back for clasping our hands together and wishing things go well. Let’s thank Jesus but not the doctors and nurses who have devoted their lives toward training to do this. And definitely not the scientists and engineers who developed the methods for your survival. Thank Jesus.

The arrogance of it drove me mad. They probably found their religious beliefs comforting, and never considered what this may sound like to people around them, since in Indiana it’s pretty much assumed you’re a Christian. It’s not just the snubbing of science that irritated me. It made me think, “Why do you think your God saved your husband, but put my mom through so much pain? Why is he worth saving but she’s made to suffer through all of this? What kind, just God would do that?”

That’s when I was glad I was an atheist in that ICU. While my Greek Orthodox grandparents were weeping and distraught, asking me desperately why God would punish my mother like this, I understood that nothing divine decided this.  It did not reflect a flaw in my mother’s character or some sin that god was punishing. It did not reflect the frequency of prayers from all the church lists she had been added to, nor was it punishment for having rabid atheists for a husband and daughter. It was bad luck, a random mutation in the wrong spot at the wrong time.

I was distraught enough over my mother’s well-being – I’m glad I didn’t have to be distraught over god’s will as well.

Sometimes, life gets hard

First off – yes, I’m alive.

Even though my blogging frequency has been pretty pathetic recently, I still get a steady trickle of emails from concerned readers who miss me. It’s an odd feeling knowing total strangers want to make sure I’m okay and miss my writing, but I do sincerely appreciate it (even if I don’t reply, sorry). It also makes me realize that not everyone follows my twitter feed, so many of you have no idea what has been going on in my life.

No, it’s not just grad school that’s been keeping me busy. These have been the hardest months of my life.

On March 15th, my mom called me. My family knows I hate talking on the phone, so when my phone is ringing and it’s not a holiday, I assume something is wrong. Usually that’s just my irrational anxiety talking, but unfortunately this time it was right. It was news I never wanted to hear – my mom had cancer again.

She had been cancer free for 8 years, after winning her battle against breast cancer during my senior year of high school. I hate to say this, but I had never been truly worried during that time. Part of it was knowing they caught it soon and that she had wonderful doctors, but part of it was definitely being a naive 17 year old. At the time I didn’t realize it, but my parents had painted a rosy picture of the situation to keep me from worrying. What I remember is my mom scheduling her chemo appointments around my high school golf matches, because she didn’t want to miss them for the world. The worst of it was kept behind the scenes.

But now I was a little bit older and wiser. In this case, being a geneticist was not very comforting. I was more aware of the realities of a cancer diagnosis, especially when cancer had come back. But I tried to stay cautiously optimistic, since there was still no official diagnosis.

A week later one morning, I was laying awake in bed worrying about my mom. My phone rang, and this time it was my dad. Getting a phone call in the morning is even more terrifying, and I knew instantly from his voice that something was horribly wrong.

He told me my mom was going to die within hours.

Hearing that out of nowhere, while stuck thousands of miles away across the country, was… I don’t even have an adjective that can describe that. Horrifying? Devastating? I was literally in hysterics, sobbing and shaking for hours. It felt like a nightmare come true. I’m so glad my boyfriend had been there, because I don’t know what I would have done without his immediate support. In the span of a week my mom had gone from perfectly healthy, living the stereotypical retired life golfing in Florida, to “going to die.”

A couple of days earlier, my mom had fluid (caused by the cancer) removed from her abdomen, and that change in pressure had caused massive blood clots to move from her legs to her lungs. “Why didn’t the doctors check for that ahead of time?” I asked myself. She couldn’t breathe. She had a 10% chance of making it, but thankfully our hometown hospital is one of the top 50 in the nation and had a cardiologist present that specialized in dealing with this problem. Also thankfully this happened at 7am on a Sunday morning, so the emergency room was empty. Who knows what would have happened to her if she hadn’t been the only patient there.

She survived. I flew out the next day to be with her.

Even though the clots had been removed, there was little emotional relief. When I got there, we were bluntly told that she may never wake up from sedation at all, or if she did she could be a vegetable. The first thing I saw when I arrived was that her tongue had swollen to grotesque proportions, filling her whole mouth and spilling out. The doctors still have no idea what was going on there and originally blamed the tape holding her breathing tube in, though my dad and I suspect they accidentally gave her antibiotics that she’s allergic to and wouldn’t admit it. When I noticed her face was starting to swell as well, they ignored me…until we had come back from lunch and her whole head had swollen up. It was devastating seeing her like that – seeing someone you love and thinking “that can’t be my mother.” Once her whole head was ballooning up, they finally admitted I had been right, and maybe they should start trying to reduce the swelling. Yeah, you’d think.

(I wish the tongue thing was the only time we dealt with incompetence from doctors and nurses… They constantly ignored call buttons for 30 minutes to an hour and I had to go run and find nurses in emergencies, they tried to give her medicine for other patients which thankfully my dad caught, they tried to give medicine in her left arm despite signs everywhere saying not to do so, some wouldn’t use gloves and were obviously not using sterile technique, doctors fought in front of her which destroyed her confidence in them… Yes, they saved her life, but at the same time my faith in doctors has definitely been shaken.)

Thankfully again, my mom beat the odds. After a couple of days she woke up. We talked by her first pointing to letters on a sheet, then by her writing, and after weeks she was able to barely speak. I can now say that months later, she can talk fairly normally and has all of her mental faculties. I feel like I can’t even thank science or medicine here – she got lucky.

The problem was, you know, my mom still had cancer. And the equivalent of a massive heart attack followed by aggressive weekly chemotherapy is not exactly a good situation. She was getting chemo even when she was still bedridden and unable to walk. She was in the hospital for 90 days, but thankfully has been home for about a month now (and is still getting chemo). Just imagine not being able to leave a hospital room for three months – no sunshine, no idea if it’s day or night, no food (thanks to the swollen tongue)… You don’t even realize the little things you take for granted, like being able to cuddle with your pet or wear your own pajamas.

As for the cancer, the chemo does seem to be working very well, which makes me rejoice. We were glad to find out it wasn’t breast cancer again, because that would have been the worst prognosis. Unfortunately, it was ovarian cancer, which is scary in its own right. We have no family history of breast or ovarian cancer, but having both occur independently in the same individual is a huge red flag that the cancer may be heritable – that is, that her genome has some mutation that predisposes her to that type of cancer. If correct, that means I would have a 50% chance of having that same mutation.

My mom could honestly care less what her genome is, since it wouldn’t really change her treatment (“Yep, you still need chemo”). But she wanted to get genetic testing for my sake. Thankfully her results said she has normal copies of BRCA1 and BRCA2, the two main breast cancer genes. Having a mutant copy of one of those greatly increases your odds of getting cancer, so hearing that news was a relief. But to a geneticist, it was a minor relief. I knew there were dozens of genes that could contribute to cancer, and dozens more that we probably haven’t even figured out yet. This just ruled out the common problems.

After my parents told her genetic counselor that I was getting my PhD in genomics, the counselor decided she would just rather talk to me directly. We chatted on the phone and she discussed how she wanted to test a larger number of genes, especially since gastrointestinal cancer runs in my mom’s family and may be related to her case. She told me her current problem – getting my mom’s insurance company to okay the test. She explained how insurance companies don’t like tests that utilize modern technology like next generation sequencing, because they rather have you pay a deductible on each individual gene than have one test that covers the whole genome.

(Yeah, they rather squeeze more money out of their dying cancer patients than do an efficient test. I never had any faith in the insurance industry to be able to say I lost it, but let’s just say my rage against them has grown. At least my parents have insurance, because after a month of treatment alone the bill was at one MILLION dollars. It’s horrible enough worrying about my mom’s health; I’m glad I don’t have to worry about their sudden bankruptcy as well.)

But I knew something this genetic counselor did not. I told her that Mary-Claire King, the scientist who discovered BRCA1 & BRCA2, worked in my department and did a cancer gene panel that was twice as large as the one the counselor was considering. After the counselor got done fangirling and squeeing over Mary-Claire (no, really, nerd glee), she asked if I could try to get my mom enrolled in MCK’s study. All it took was one email, and minutes later MCK had said yes. My mom no longer had to worry about insurance, she would learn more about her genome than from some company’s test, and she’d contribute to a growing body of knowledge about cancer genetics.

While I’m relieved to know I’ll have this information, it has been an emotional process. Part of me is terrified for myself. I’ve seen how cancer has affected my mom. The physical weakness, the loss of hair (which can really hurt a woman’s self-esteem), the inability to eat (how I wish Indiana had medical marijuana, or that I could smuggle some from Seattle). Not to mention the giant cloud of doom reminding you that, yeah, you may die from this. It really scares me wondering if I’ll have to go through the same thing when I’m her age, or if I’ll get unlucky and it’ll strike me sooner.

And at the same time, I feel guilty for worrying about myself at all. I feel selfish worrying about what might happen to me in 30 years, compared to what’s happening to my mother right now. I feel guilty that I can only visit her a little bit before I have to come back to work, even though she’s told me that me finishing my PhD is the most important thing to her. I feel guilty that my dad has to be her full-time caretaker and home nurse now, while I get to go “back to normal.” I feel guilty every time I have a moment of happiness when I’m back in Seattle, because I feel like I should always be worrying about her.

I’ve never been good at prioritizing taking care of myself, but now it feels damn near impossible.

And that’s partly why I’ve been so depressed the last couple of months. Worrying about my mom, worrying about myself, feeling guilty about worrying about myself… I wish those were the only things stressing me out, because I could barely handle those. My boyfriend is graduating with his PhD this year (yay!) but that means we’re worried that he won’t be able to find a job in Seattle and will have to move far away (not yay). Grad school has been rough (which is a redundant statement, right?). I’ve been feeling very lost and without guidance for a while now, since my project is very unique and I’ve basically created it from the ground up (or as another grad student told me, I went straight from undergrad to a postdoc). My current experiments aren’t working, and even though troubleshooting lab work is totally normal, it can be crushing when you’re already down. It makes me feel like a failure and an imposter who shouldn’t even be in grad school. My lab is also having some funding woes, so I feel a lot of pressure not to screw anything up or waste supplies because we may not have the money for a round two. The cherry on top is that the two other grad students in my lab are graduating in the next month, so I will be the only graduate student left. I already felt lost and alone, but now it’s just going to be me, my adviser, and our research scientist.

The problem with depression is that even if you have understandable reasons to be depressed, it can make you unreasonable about everything else. I have particularly bad anhedonia – nothing really give me any pleasure. When asked to list my hobbies, I list things I used to enjoy. I have no motivation to do anything, even “fun” things.  Getting out of bed in the morning is a chore. I haven’t had an appetite in weeks, but I just keep feeding myself because I know I have to. I had convinced myself I had no friends who actually cared about me or wanted to hang out with me, which turned me into an even more lonely hermit. I’ve lost all of my goals and dreams, and when I think about the future I just despair. Every news article or opinion piece I read just makes me think how fucked and unfixable the world is, and I feel hopeless to do anything to make the world better.

And the fucked up thing about depression is that it convinces you that all of this is true, and you are the problem. Depression is like having sunglasses glued to your head and insisting the world is dark, even when you rationally know its bright. I was literally convinced for months that there was no hope in the future and that I would never feel happy again. Right now I can’t remember what it feels like to be happy. It wasn’t until yesterday that I had a small moment of clarity when I realized that my brain was lying to me. Not only that my brain was lying to me, but that I had gone through this exact thing before! There have been many times in my life where I’ve felt this way, but happiness and motivation and normalcy always came back eventually. I need to remind myself that this too shall pass.

I’m attempting therapy again (thank you, Secular Therapist Project). At least this time I’m pretty sure they won’t suggest Buddhism and spirituality as the solution (no thank you, University of Washington mental health services). Unfortunately the health insurance they give us grad students is kind of crap, so it looks like I’ll be paying mostly out of pocket for it. But thankfully I have a good amount of savings and just got a raise (thank you, National Science Foundation) so it won’t be a huge issue, and I’m trying to start viewing my mental health as something worth investing in. This isn’t a pity call for money – if you feel the urge to donate, pick your favorite cancer research charity and that will make me happy.

I don’t really have a take home message or wrap up for this post. I simply realized that writing has always been therapeutic for me, and when I quit blogging I threw away that therapy along with a social support network (you guys!). I’ve been meaning to get this off my chest, so here it is.

Dear life: Please stop sucking soon.