#criptax

Some of my disability / chronic illness friends are currently tweeting* about the #criptax.

Basically, the idea behind #criptax is that disabled people pay, monetarily, a much higher cost than non-disabled folks, often in ways overlooked by society.

To throw my own hat in the ring:

  • Salary. I’m currently on an 80% contract, because that’s the amount of functionality I can guarantee, especially once you subtract time for doctors appointments and therapy. So that’s 80% of another postdoc’s money, right off the bat.
  • Therapy. I spend twice as much on therapy as I do on food. Between what it costs and the time/energy I have to take out of my day, it’s a full day’s wages, each and every week. Most days, I understand that it’s important for me to take care of my mental health. There were times during my PhD, though, when I was flat broke, that I was going to therapy only because both my best friend and my partner informed me that they wouldn’t talk to me unless I swore that I was regularly seeing a professional, and I resented the hell out of this fact.
  • Food. Most days, I don’t have the energy to cook, which means I either eat very unhealthily or very expensively.
  • Housing. Between problems with balance and problems with vision, I can’t cycle, and I certainly shouldn’t be driving. This limits where I can live — and, surprise, areas within walking distance or easy public transport of major universities are not cheap. Thanks to my disability, I’m also hardly the ideal roommate — I’m hypersensitive to noise and to smells, I have a really odd sleep schedule, and I get pretty control-freak-y when I’m stressed. I also throw up a lot. This year I’m living alone and it’s amazing — I never again want to live with strangers — but it’s also very expensive.
  • Transport. Taking the bus or a taxi when healthy!me could walk or cycle. Paying more money so that I can fly or take trains at times of day that work for my medications. It adds up.

And I live in a country with socialized medicine! All of my visits to people with medical degrees are completely free, I pay a flat annual rate for prescriptions, and I don’t take that many over-the-counter medications. I also don’t have to worry about battling insurance companies, and I’m lucky enough to have a boss who’s flexible enough to accommodate my disability without me having to deal with any of this officially — the administrative time lost by most disabled people is huge.

Anyway, the point of all of this is: having a chronic illness is expensive. We pay with our time, our money, and our energy, just to exist.

* Should I get on Twitter? On the one hand, really great disability-in-academia conversations going on there. On the other hand, I already run three Twitter accounts (two professional organizations that I represent, plus my own name, which let’s be honest is mostly politics these days), and that already seems like Too Much Twitter.

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Things I am currently stressed about, in no particular order

  1. My pain has been increasing recently. This both sucks in the short term (I have things to get done!) and is worrisome in the longer-term (what if this is more permanent?).
  2. I still haven’t decided what to do about these new meds. Are they helping my pain? Hard to tell. How much less anxious would I be if I got off them? It’s been two months, the anxiety’s become normalized, it’s hard to tell. How much should I be caring about the fact that they’re really screwing with my memory? That’s such an existential question, and mentally healthy me doesn’t do existential questions.
  3. I’ve been told by two therapists in a row that we “aren’t a good fit.” Rejection sucks. And it’s a waste of time, of money, of mental energy…
  4. It’s been a week and I still haven’t heard any more about my “informal job offer” and this is making me antsy. I’ve gotten rejected for two more jobs in the interim (one that I thought I was a good candidate for, another one where they re-opened the search, ouch). While I know that the academic job market it tough, particularly for foreigners, particularly for someone whose CV is sprinkled with holes and red flags, rejection’s still hard.
  5. A collaborator whose opinion I value is getting very stressed about some data version control issues that we’ve been having. Which I absolutely get — the data’s messy and it’s mostly my fault and it’s a high-stakes situation (time crunch, Big Name Publication, her professional life’s a bit overwhelming, this project is massive and basically everything about it except me has sucked and now I’m sucking and that, well, sucks). But, like, when I screw up it’s a Big Deal but when she screws up everyone just shrugs, and I’m getting a bit sick of the double standard. Also a bunch of people get CC’d whenever she tells me off for screwing something up and it’s like…seriously? You couldn’t tell me off in private?
  6. Two separate collaborators want analyses that I’ve promised them and have I done these analyses yet no I have not.
  7. My supervisor also wants analyses and have I done these analyses no I have not.
  8. My former PhD supervisor decided that last week would be the week that she decided to remind me about all the things that I should be publishing out of my PhD and it’s like…yes, I’m aware of all of these things…
  9. The fact that I have so many unfinished projects and am not finishing them is starting to look less like an unfortunate situational coincidence and more like a character flaw and it’s like, damn, what exactly am I supposed to do about this??

Twitter is making me angry today, and I can’t say why under my real name.

If you’ve checked science/academic Twitter today, you’ve probably noticed that an anonymous account has managed to explode our little corner of the Twittersphere.

I won’t give him a bigger platform than he has already, but in short, a bitter early-career professor who has taken to Twitter to vent about undergrads has said some extremely nasty things about his students, including his students with disabilities.

These tweets have struck a nerve, and it turns out everyone on Twitter has an opinion, from “ugh kids these days are so whiny” to “yo, our students are adults and are deserving of respect” to scores of disabled students sharing their horror stories about how they’ve been pushed out of academia by professors like this man.

I have occasionally thought about what my life would have been like if I had first gotten sick during undergrad, rather than grad school. In many ways, grad school’s a great time to get a serious chronic illness; I basically disappeared for a year, and nobody noticed or cared. Being a healthy undergrad is hard; having a chronic illness is incredibly hard. Being a disabled undergrad? Eek. Reading these heartbreaking and enraging threads on Twitter, it’s really driving home to me how screwed up our system is.

Because here’s the thing. I was one of the top undergrads at my Very Fancy University in my year. Not just in my subject — I was indeed the top student in my department — but across the entire sciences division. I won a Very Fancy Independent Fellowship to fund my PhD. I have perfect scores in various standardized tests. Yes, tests, plural. I also come from rural middle of nowhere, and while I own’t deny that my background includes a lot of privilege, it also includes a lot of hardship. I am a hard worker, and I am smart, and having a neurological disorder changes neither of these things.

But yet, reading these stories, it’s clear that my chronic illness would have prevented me from succeeding in, if not finishing, my undergraduate degree. During the year between when I first started showing symptoms and when I was finally diagnosed, I wouldn’t have been able to access the resources of the disability office, which means my “accommodations” would have been at the mercy of each individual professor. And it’s clear from Twitter that this wouldn’t have gone well. Even today, when my symptoms are reasonably well-managed, there are days when I can’t stand up without passing out, when I’m in too much pain to move, when my medications make me throw up for hours on end — as an undergrad, how would I have managed mandatory attendance policies? What would happen if I had to miss an exam? Or for another example: I can’t stand up for long periods of time — how, exactly, would I have done my required laboratory classes? Or, for another one of my classes, a class which I absolutely loved and which inspired the research that became my PhD — there was a weekend field component. The field component wasn’t graded and wasn’t part of the exams, but attendance was still required. Between my balance issues, my vision issues, my fatigue issues, and the fact that my medications have to be very carefully timed, there’s no way that I could have participated in the field component. Could I still have taken the class?

And if I had said to these professors, “hi, I have this neurological disorder, here’s what I need from you in order to succeed in your class,” if I had gotten back an answer of “well, then, you don’t belong in science,” an answer so many people are giving on Twitter today, what would I have done? I was a fairly insecure undergraduate, a queer woman from rural middle-of-nowhere looking around at straight, white men from rich, posh, urban places. I had, and to some extend still have, pretty substantial impostor syndrome, convinced that someone had made a mistake in letting me into this Very Fancy University. Would I have believed these powerful professors, experts in the field I was so desperate to enter, and switched my degree to something less demanding, or even transferred to a less prestigious university whose students’ backgrounds more closely matched my own?

Maybe.

Moreover, the university where I did my undergrad is well-known for being pretty terrible when it comes to mental health, something that I struggled with during graduate school. (Surprise: severe, chronic pain + serious, incurable diagnosis + all the normal isolating shit that comes with being a foreign graduate student = poor mental health.) Whereby “pretty terrible,” I mean that if they suspect you have a mental health problem, you are suspended from the university with essentially no notice — which means you lose your health insurance, your housing, your visa if you’re a foreign student, your access to anything on-campus (like, say, your academic and social support networks), and so forth. To be reinstated as a student, you have to re-apply, and the process is draconian and can only occur once a year. And I’m not just talking “danger to yourself or others” mental health problems. I’m also talking, say, eating disorders.

So, students lie, and they don’t get the help they need. Would I have done that? Would I have even survived that? (Some don’t survive. Surprise: incentivizing students to lie about their health doesn’t work out well for anyone.)

The accommodations I would have needed as an undergraduate would not have been unreasonable. Flexibility when it came to deadlines and exams. Exemptions from attendance requirements. A way to do laboratory requirements while seated and a discussion of whether unexamined, ungraded field trips were actually a necessary part of a particular course. Clear requirements about what I had to disclose and an expectation of privacy for the information I did disclose.

You want science to be filled with the best and the brightest, right? Then please remember that not all scientists need to be able to stand up for long periods of time. Not all scientists need to be able to function in the early morning, or late at night, or on a regular schedule, or whatever else it is that you’re trying to force your undergrads to do. Not all scientists need to have had their life and their physical and mental health completely together from ages 18 to 22. Not all scientists need to be able to jump through arbitrary hoops that you put in place to make yourself feel powerful.

Your students are adults. Please respect that. You don’t know, nor can you tell, nor do you need to know, which of your students are homeless, which of your students are suffering with a serious health condition, which of your students are dealing with an abusive situation at home. It is your job, as a teacher, to create an environment which is conducive to your students’ learning, and that means all of your students. Sometimes creating an environment maximally conducive to learning will involve laying down the law — hey, boundaries are really great things! — but if “laying down the law” is your primary goal, I think you’re doing it wrong. Try respect. Try compassion.

I maybe have a job. Maybe.

My current position only lasts a year. (It’s a visa issue and oh boy does everyone involved wish I had the legal right to stay in this country.)

When you’re a postdoc on the job market, you apply for anything and everything. Last year I learned from some of my mistakes — I had both aimed too high and too broad — but I was still expecting a long, stressful process.

But, um, looks like maybe not. Job application #4 turned into interview #2 has turned into “informal job offer” #1.

Now, on the one hand, this is weird. I am not a good candidate for this job. Yes, it’s in my field, broadly defined, but this PI was asking for some subspecialities which I clearly don’t have. And yes, I wrote some BS in my cover letter about being able to quickly pick up those skills, but this PI should be able to have his pick of postdocs; he should be able to find someone who already has those skills, not someone who will have to learn those skills. Furthermore, between having a serious chronic illness and the fact that my PhD pretty much sucked, the recent portion of my CV is terrible. I am a walking, talking red flag. Yes, I am very good at my current job, and I was very good at my old job, but he’s considering hiring me to do something else entirely. Objectively, it’s very odd.

On the other hand, assuming this job actually materializes, it would be two more years of employment, as a postdoc, in a country with socialized medicine. I’m not the most excited about the project, but I do have a relevant skillset, and I’ve asked around — this PI checks out both professionally and personally. It would mean living farther away from my girlfriend, but not absurdly so, and we’re both okay with some long-distance. It would mean that I can stop spending time applying for jobs, stop spending energy worrying about jobs, channel that emotion into resurrecting my CV and spending time with my girlfriend while I can.

I talked to my current supervisor, and she thinks that I should take it. (This was a really good conversation. Having awesome supervisors is so great.)

Possibly relatedly, given the stressy tone of this blog post, I’ve decided not to go off the anxiety-inducing Wonder Drug, at least for now. I like being in less pain. I like having more energy. Is anxiety an issue? Sure. Should I be concerned that this anxiety is becoming increasingly normalized? Probably. I’m seeing a new therapist tomorrow; we’ll see if I click with her.

I’m also aware that I haven’t had very much social interaction recently. I’ve been alone in my office for most of this past week, and my girlfriend and I weren’t able to see each other over this past weekend. (Chronic illness with severe fatigue issues -> not much opportunity to make friends outside of work.) I’m one of those people who gets really unhappy without regular human contact; isolation and its toll on my mental health was a major problem during my PhD fieldwork. I think/hope I’ll be happier when my officemates get back from their various travels?

I guess my point is this: sigh. Why can’t life be easy?

How bad is the end of a PhD? Not that bad. It’ll be okay.

One of the PhD students in my group is in the throes of “thesis crunch time.” Another student is looking at her timeline and beginning to despair. They are looking to the postdocs in the group and asking us “how bad was it, really?”

How bad were the last few months of my PhD? Golly, it was bad, but that wasn’t the PhD’s fault.

I was flat broke. (Chronic illnesses are expensive, yo.) I was stringing together as many part-time jobs as my health and visa allowed, trying to pay rent, to pay for therapy, to pay for medication. I was juggling doctor’s appointments and medication side effects, trying to keep my physical health in check, trying to keep my mental health in check. I was applying for jobs, going to job interviews, not getting jobs, stressing out about the fact that sometimes job interviews don’t reimburse you for travel expenses and they certainly don’t reimburse you for the loss of a day’s income.

Also, my PhD supervisor and I weren’t exactly getting along. Part of me was wondering what would happen if my supervisor sabotaged my degree and I failed my defense.

Around this all, I would write. A bit here, a bit there. My supervisor was refusing to read my chapters, but my friends and collaborators did, and their feedback was all really positive. My examiners both knew what was up, both medically and supervisorially, and I knew that they both liked my work and liked me as a person. Even though it was bad, there was reason to hope.

Then I got hired in my current job. That afternoon, I quit my part-time job, and I went into crazy-writing mode. Two weeks later, my thesis was handed in. (What did I do to celebrate? Hopped on a bus, went to a doctor’s appointment.) I worked as a research assistant between the hand-in and the viva, passed my viva with no corrections, and started work as a post-doc the next day.

Not to be a walking cliche, but having a chronic illness really does put life into perspective. Sometimes there would be moments of moments of bitter irony. Once, during my PhD, I sat down to have lunch with a friend, asked her how her day had been. Awful, she said. Her paper had been rejected from a top-tier journal. Her life was over. 

My day? Oh, um, well, I had spent the morning at the hospital, and the doctor had told me that surgery wasn’t a viable option, that what I have was incurable.

(Protip: incurable diseases are conversation killers.)

Or, same friend, different lunch, complaining about how hungover she had been over the weekend, how a fun evening of binge-drinking had resulted in various vomited-filled escapades.

And me? Well, yesterday, I had gotten radioactive stuff pumped into my veins and had almost thrown up on the nurse, so I could relate, right?

(Radioactive substances: also conversation killers.)

My point is this: you’ll make it. PhDs are tough, but they can be vanquished. Take a deep breath. Take a walk. Spend some time with your partner, with your dog, with a hobby. See a therapist, do some yoga, turn off the internet, do whatever it takes to keep your head on straight and get the damn thing written. Break your to-do list down into little chunks, and if that doesn’t work, break it down into littler chunks.

There’s a light at the end of the tunnel. It’s okay to be okay.

Kidney stones don’t hurt that much and other things I learned this week

You know how I inaugurated this blog by explaining that a new medication has given me an anxiety disorder?

Well, the anxiety didn’t “go away within 2-3 weeks.” In fact, it got worse, as did the paresthesia, the incredibly painful burning sensation in my hands and feet. So at week 4, I stopped increasing the dose. And then at week 5, I developed what appears to be kidney stones, which is also a side effect of this medication.

Right, okay, at that point even I knew that it’s time to see my GP.

My GP immediately pointed out that I didn’t just have an anxiety disorder, but hypomania (oh, right, duh), and that I need to get off this medication basically immediately. Well, okay, by “immediately” I mean that I have to wean myself off the drug slowly — ideally we’d go over 6 weeks from this halfway dose (it would be 14 weeks from the full dose had I made it up that far), but we’ll go faster, 2-4 weeks. If while I’m withdrawing I can demonstrate that I am not anxious/manic at a lower dose, then we can play around with small doses.

If not? Goodbye, wonder drug.

Because it really was a wonder drug. This medication worked so damn well, and that’s not just the hypomania talking. I was able to function under it in a way that I haven’t been able to in years.

My GP is right, though. Anxiety’s not sustainable. Hypomania’s not sustainable. What was obviously foreign and abnormal after “only” five weeks would slowly become normalized, and thus my behavior would come to match my thoughts. Also, even though I say that kidney stones aren’t that painful, that’s (a) because I got rather lucky this time and (b) because I’ve got a really screwed up pain scale. (A migraine every single day for three and a half years will do that to you.) Kidney stones are not sustainable.

So, where does that leave me? I’m anxious and mildly hyperactive and my hands and feet are burning and the middle of my back really hurts, all because of my medication, even on a drastically-reduced dose. Also, I have a headache and am nauseated and am having trouble speaking and might at some point start having seizures, because I am simultaneously withdrawing from this medication. I have data to collect and analyses to run and paper drafts to comment on and a grant to write and some grants to review and god knows what else, because such is the life of a postdoc.

I can do this.

It will be okay.

Unspoken emigration requirements for ECRs are discriminatory

On Saturday night, I dreamed about a dessert from my home country.

I don’t know why I dreamed of this particular dessert — I’ve probably only had it a handful of times in my life — but ever since then, I’ve been craving it. It’s a branded dessert, made by a certain company, and it’s not something that I have the skills, equipment, or the ingredients to recreate myself.

It’s not available in my adopted country.

On Thursday evening, I attended a mentoring workshop for early-career researchers, part of a program that pairs senior academics with postdocs and postdocs with PhD students, with some university-affiliated non-academic folks thrown in for good measure (academic administration, journalists, etc). The evening was a good mix of “here is my advice to you” and “here is how to be a good mentor,” but the reason that I’m bringing it up is that one of the theme of the evenings was academic mobility. Early-career researchers are expected to move labs, move cities, and, most of all, move countries, if they want to succeed in academia.

But you know what?

Sometimes it sucks to be an immigrant.

I will pause right here to acknowledge my tremendous amount of privilege. I am the majority race of both my home country and my adopted country. You can’t tell that I’m an immigrant from my name or from my appearance. My home country has reasonably high prestige within my adopted country; the stereotypes I have to put up with are relatively benign. I am part of a religious minority in my adopted country, but this is currently a non-issue, and as a queer woman I have excellent legal protection in my adopted country and even comparatively decent legal protection in my home country. (By which I mean, I won’t be killed or put in jail, but I could be fired, denied health care, denied a lease, etc, if it was discovered that my partner was a woman. I’ve brought my partner home to visit my parents, but we don’t touch each other in public. At the moment I’m out on social media, but if I were living in my home country I probably wouldn’t be out at work. This is absolutely nothing compared to the situation in, say, Uganda. But that doesn’t make it right.)

But anyway, when you’re an immigrant, everything is just a little bit harder. Visas are expensive. Banking is difficult. Signing leases is both expensive and difficult! You find yourself Googling things like “what kind of store do I buy pillows in?”

Social customs completely pass you by, and you only find out months later than everybody thought that you were a little bit rude, or weird, or overbearing. Sometimes, I’ll be explaining something to my therapist, only to discover that there’s a cultural element that she’s just not getting. Sometimes, you have to adapt. Sometimes, you don’t want to adapt, goddammit.

You miss weddings. You miss funerals. Instead of living in one of a handful of possible cities as all of your friends from high school and university, you’re miles away, living in a place where you know nobody, where absolutely everything is just a little bit different. (Or a lot bit different.)

And nevermind a particular dessert not being available — though healthcare sucks in my home country and is amazing  in my adopted country, there are more drugs licensed in my home country than there are here.

Some people are able to move country a few times early in their career. They have good mental health, spare cash to spare for visas and relocation expenses, a partner and children willing to be uprooted (or no partner and no children), no physical health concerns that tie them to a particular country’s health care system. They’re cisgendered, they’re straight, they’re white — or they’re willing to pay the significant emotional cost of being a minority abroad. Maybe they have family or friends in another country, maybe they’re already fluent in a foreign language, maybe they’re just particularly adventurous.

But see, none of those qualities that I listed bear any relation to how good of a scientist that person is. In fact, most of those qualities have to do with luck and/or high socioeconomic standing.

Next time you’re comparing CVs and you’re impressed by someone’s experiences abroad — or are judging the fact that someone else has never left their own country — remember this. Remember that the ability to be an immigrant says more about their personal circumstances than their academic merit. Remember that not everybody can be an immigrant.