Politics

I am doing great. Better than I've been in half a year. Part of it, certainly, is due to the enormous burden that's been lifted from my shoulders now that I've completed my PhD. I had my doubts, honestly, that I would finish it. Over the past three years, I've questioned my mental fortitude a lot and I've questioned whether I will remain a fully-functioning human being going in to the future. My PhD is a victory, one of several victories I've had recently, and these victories are making me optimistic about the future.

Another reason I'm feeling so well? I got my hip replacement three weeks ago. Sure, I can't go through metal detectors without setting them off anymore, but I can walk again. For the first time in half a year, I'm not in any pain. I can usually deal with pain, but when you're in pain for so long that it becomes a part of who you are, that's a real problem. It affects every aspect of your life. I couldn't even really see the impact that it was having until the pain was gone. But it is gone now, so I'm feeling great. Now I just need to work on my gait.

Months of immobility have done one thing in particular that I'd like to write about today: it made me political. As a young adult, I didn't really care about politics. It's actually a lot like sports (which I also don't really care about), and I never really felt like it mattered much to me. Now that I'm not legally allowed to be on Ted's insurance because it's provided by the federal government, I realize that I care quite a bit. I'm going to try to say this as succinctly as I can.

To my devoutly Christian friends: you know that I respect your beliefs even though I disagree with them. My family is very Christian, and I respect that. I even don't complain about them raising their children to only be exposed to one specific set of Christian beliefs even though I believe that it is detrimental to the children's development. I support their beliefs; not strongly, I admit -- for instance I don't contribute money to my brother's missionary work -- but I do support them.

That's why anti-marriage equality people infuriate me, and they should infuriate you to. The only argument that I have ever heard that has any legal basis for banning marriage equality is the argument that "redefining" marriage will restrict the right to religious freedom. Unfortunately for the anti-marriage equality people, this argument favors marriage equality. I believe that same sex couples should be able to marry. Why is it OK to remove my right to believe something, but not yours? Because I'm an athiest? Wikipedia has a great list of Christian religions that support same-sex marriage. What about their religious freedom?

You can continue to believe that marriage is what you think it is. There has never been a singular, consistent definition of marriage that everyone follows, and even the traditions, meaning, and purpose of marriage has varied significantly over time and across societies. The reason we have so much trouble agreeing on a definition of marriage is that it is hard to define. It means different things to different people. When enough people believe that the definition given by law does not adequately reflect the reality of life, it is time for that law to change. It is past time for that law to change.

So, obviously I support gay marriage, but I truly believe and I think many agree that it's a non-partisan issue. I'm a registered independent though I admit that I have liberal leanings. I understand all-too-well the power of the free market which is why I understand that certain people, especially the poor and historically disadvantaged, need to be protected from it in the interest of fairness. So I admit, I'm a bit biased in favor of Obama. I think that it's true that, just by virtue of being Obama and being irrationally hated by a small, vocal part of the population, America has not seen the progress it has needed. The Republican agenda of austerity, though, has never seemed right to me, and Europe is suggesting that that path would have been dangerous. I really hope that this election removes the obstructionist elements of Congress so that our lawmakers can finally get something done, but I'm not holding my breath.

Anyway, the thing that really prompted this post was the recent post about Romney bullying a fellow student. I don't care that the student was gay. I care that the student was seen as something "other", whatever Romney might have thought about this kid. I consider myself to be a very forgiving person, often willing to attribute bad behavior to a lack of empathy rather than actual malice unless the evidence says otherwise. I want to believe that people, on the whole, are good and want to support their fellow man. So I'd really like to say that this story doesn't affect my opinion of Romney, that it was just a folly of youth.

The reason I can't say that, though, is that the man hasn't changed. He's still a bully, rallying other likeminded people around him to persecute the people he doesn't like. Women, gays, the poor, the elderly, foreigners. They're all fair game to the Republican machine. Romney is comfortable with that, because he wants to be popular. Whether he once supported gay marriage or not, he certainly doesn't now, because that's not what his buddies support. The analogy that Romney is a well-oiled weather vane is incredibly accurate. What we need in these difficult times is not a president who will be swayed by public opinion even though they know that public opinion is wrong.

We need a president who has conviction, and who will do the right thing if they can. I am incredibly proud of Obama. In 2008, I understand that he could not support marriage equality. He needed the votes that he could get. No one believes that he did not personally support marriage equality, but as a matter of policy it was not something that he could take on then. Now, he has come out in support of marriage equality at great risk. He has done so because it is the right thing to do and he thinks that he can still win with that position. For what it's worth, President Obama, I believe you can still win too. I hope that you do. But it will all be for nothing if we fail to remove the obstructions from Congress so that we can put this country back on track. It will all be for nothing if we fail to get the votes to put laws into effect that will give equality to everyone. Re-electing Obama is important, but so is the rest of your vote.

Conclusion

Writing a conclusion for my thesis feels really strange. I kind of didn't really believe that it would ever be over, or maybe I just didn't believe that I would make it to this point. I'm not sure. Either way, it's definitely putting the last seven years in perspective.

I think in the end, my leukemia diagnosis coinciding with winning an award for Persona was especially bad for my mental health the past few years. I went from being amazingly lucky to have been in the right place at the right time doing great work, to being completely unsure of myself and feeling unable to live up to my past successes. It's bad enough when you're in grad school to compare yourself to other students, but to also have to compare yourself to your past self is a burden that can really drag you down, emotionally.

I remember being told to relax and focus on getting better by my advisor more times than I can count, and he's been right about it every time but of course it's not in my nature to listen to him. I kept feeling that so much was expected of me after Persona that it would disappoint Bobby and Neil if I didn't hit upon the next big topic and run with it soon. For a while after the bone marrow transplant, I found myself jumping from topic to topic, only discovering that someone else had beaten me to the punch or that the problem wasn't as novel as I wanted it to be. I became very critical of my own work and of the problems that I deemed worth working on. Naturally I also became very dissatisfied with many of the papers that I read because I had trouble believing that they even got published. At some point I set my bar way too high and I wasn't able to get it back down.

I've submitted something to SIGCOMM that has a chance to get in, though I'm not too optimistic. It's the first thing that I've actually gone all the way with and submitted since 2009, which feels like it's far too long ago. Part of me feels regret that I haven't managed to do more with my time in grad school. The other part of me, having just read through my entire dissertation, feels like I've actually accomplished a lot, even if most of it was from 2009 and before. More importantly, that part of me feels like I'm reaching the end of a journey, and I actually kind of find it hard to read the conclusion without getting at least a little emotional. This was a huge part of my life for the past seven years, and when you think about it, it's going to be a huge part of my life overall. Seeing my complete thesis makes it feel like all of the long nights, unreasonable demands, and unexpected difficulties on the road to the PhD have all been worth it. This is something I did. Nothing can take that away.

Health Care and OSNs

I'm working on my thesis right now. Rereading and editing our Persona paper, I reached the section about inherently private online social network (OSN) applications. I remember at the time thinking that sharing health information with doctors through an OSN was a weak example.

Of course, that was before I got leukemia. Now that I'm much more familiar with the health care system, I feel like this is the best reason for a Persona-like OSN. The. Best. Reason. Dealing with multiple doctors, health insurance representatives, and a pharmacy often reminds me of that old game: "Randy, would you please tell your brother that I'm not talking to him right now?" This is a more-or-less real example of how it works.

Dr. #1: "Randy, tell Dr. #2 that I said you can't have your surgery next week because you were sick last week."
Randy: "Why don't you tell him?"
(...Silence...)
Randy: "Well, you'll at least tell him what medications I'm on, right? He needs to know that."
Dr. #1: "No, you should do that too."
Randy: "Will he be able to do his job correctly based on second-hand knowledge given to him from someone who isn't a medical professional?"
Dr. #1: (flippantly) "Sure, why not?"
(...Pause for dramatic effect...)
Randy: "You know, I'm a fairly smart and organized person; how in the hell do your dumber patients manage to navigate this system without causing themselves serious harm?"
Dr. #1: "Sink or swim? Don't forget to go to radiology and get some x-rays; you'll need to take them with you when you see Dr. #2 next. They'll be expecting you."
Randy: "No they won't."
Dr. #1: "They will if you call ahead."
(...Randy shambles over to radiology on his broken hip...)
Receptionist: "Do you have a prescription from Dr. #1?"
Randy: "No, but he's in this same building. Shouldn't it be in your system? Can't you just call him?"
(...The receptionist stares at Randy as if he's from another planet...)
Receptionist: "If you don't have a prescription from Dr. #1 insurance won't cover it."
(...Shamble, shamble, shamble...)

OK, so, I'm being a bit unfair to the doctors and the receptionists and the nurses here. My doctor's not really a jackass like I'm making him out to be, and he's just doing his job filling a role in a broken system. Blaming him isn't going to change anything. As a wise man once said, "You're treating a symptom, when the disease rages on, consumes the human race. The fish rots from the head, as they say, so my thinking is why not cut off the head?" Unfortunately, the health care system, like other broken systems (campaign finance, the tax code, Congress) in America these days, seems to be more hydra than fish: the more heads you cut off, the more that take their place.

In any case, the primary barrier to better privacy controls in OSNs that might enable health care collaboration is not a technical one but a social or business one: how do you pay for it and how do you convince people to use it? I wish I had the answers to those questions, but right now all I want to do is finish my thesis and get a job.

Getting a job immediately after I finish my PhD in May is absolutely crucial: because of DOMA, I can't be included on Ted's health insurance so I will need (possibly in the literal, will-actually-die-without sense of the word) to have some sort of health insurance of my own. Kind of takes some of the celebration out of the fact that marriage equality is coming to Maryland very soon, since it doesn't do anything to change DOMA. I'm sure that President Obama's going to take care of that during his second term, but I don't have the luxury of waiting for that. I remember when I was younger thinking that politics really didn't affect me much and so I didn't care much about it. Suddenly, I feel like so many of the big issues of the day -- marriage equality, health care, government spending -- impact me specifically. Thank goodness I'm not also an immigrant woman... I might explode from the political pressure, or even worse, get featured on CNN in a fluff piece.

Resentment

It's 4 AM and I can't sleep. That means one of two things: either my medication is making me keep crazy hours, or my head is full of serious thoughts that only a blog post can dislodge. In this case, I think it's the latter.

I'm kind of in a rut right now. Ruts aren't entirely bad. A rut is stable, and that's something that can be welcome after an unpredictable cancer treatment. But obviously I wouldn't call it a rut if I weren't at least a little bit discontented. It's really the PhD thing that's causing these feelings. I'm ready to graduate. I should have graduated by now. It's going to happen in May, and it can't happen sooner, even if I were to work four times as hard as I'm working now. All of the pieces of a Rube Goldberg device are set up and in place, and I'm off watching videos of cats on the Internet while I wait for the thing to finish going off. I should feel more engaged in the process, and in my current work, but I don't. I just want to move on with my life.

I've continued to have success with my work despite my malaise and my health difficulties. I wanted to have a paper ready in time for NSDI, and I was pretty close to doing it, but I eventually decided that the stress of the deadline was bad for me and that it wasn't worth it to work myself into the ground when SIGCOMM, with a deadline several months later, was just as good of a fit for this work.

In fact, there are a lot of advantages to publishing in SIGCOMM instead of NSDI. It gives me time to polish the work to the extent that it deserves, a discipline that I think is often lost in the "publish or perish" pace of my field. NSDI is in San Jose, while SIGCOMM is in Helsinki. Helsinki just sounds better. Say it with me. "Helsinki." How could you not want to go there? Then there's the fact that I don't have to start moving on to a new project while starting my job search (I already have my first interview!). As far as I can tell, the only real advantage of NSDI over SIGCOMM is that, if the paper were to get rejected, I would have helpful feedback from the reviewers for resubmitting to SIGCOMM. But I have a simple solution to this: I'll just write a paper so good that no one can possibly reject it. I know, it's an elegant solution.

Did I mention that it's 4:30 AM? (Actually, now it's 5:30 AM - I had to come back to this point in the blog post to let you know that the next few paragraphs are going to ramble a bit, but that I promise I have a point at the end of it. And I think it's a good one. Stay tuned.)

Healthwise I'm kind of in a rut, too, finally. For the past few months things have been difficult though. Back in July or so, my GVHD got pretty bad, to the point where the rash had spread to most of my upper torso. Here's the thing about GVHD: it's an auto-immune response, so what you can directly observe happening to my skin is actually a pretty good measurement of what's happening to my internal organs. I don't know if you know this, but your immune system has hooks into every other system in your body: your muscular system, your skeletal system, your nervous system, your digestive system, your respiratory system, your reproductive system, and obviously your circulatory system. I'm sure I'm leaving some out, but those are the ones that come to mind, because those are the ones that I become acutely aware of when the GVHD gets bad, whether it's because they're causing me pain or just because I'm paranoid about what kind of permanent damage might be happening to them.

In any case, the fix is pretty straightforward. I've been around the block enough times now that I could probably have done the doctor's job for him this time (not to diminish his efforts, but his advice and recommendations have all been extremely predictable). I went on methylprednisolone, a steroid, at a fairly high dosage. It cleared up the GVHD in very little time, one or two days, as expected. But you don't just get to stop taking steroids; your body gets used to them and you have to gradually wean yourself off of them. And unfortunately there are a dozen side effects during that time.

Let's start with the mooboo, my pet name for all of the swelling, especially of my face, neck, and fingers. This is my least favorite side effect. You'd think that swelling wouldn't be so bad, since it's mostly cosmetic. But it turns out that cosmetic things matter to me. I find myself distracted in social situations, especially when meeting new people, because I can't help but be concerned with my appearance. When I look into the mirror, I see an ugly, twisted reflection of my self-perception: my bulging cheeks force my eyes and my mouth half-closed, simultaneously making me look half-asleep and unhappy, even when I'm not. What do other people see? Do they think I'm unhappy? Or not paying attention to them? Maybe I'm not paying attention to them, but it's because I'm too busy thinking about what they're thinking about me to just be a normal person. This is why I hate face-to-face social interaction. Give me text to hide behind, and I'll tell you anything. Really this is nothing new; I've been socially awkward like this for my entire life, but I haven't had quite as MUCH distracting me before.

Next is the eye bubbles. My eyes have been in terrible shape for the better part of a year, and there doesn't seem to be anything that the doctors can do. When I get enough sleep, it's better, and they'll last from about 9:00 to 3:00, which is most of a work day at least. After that, everything is so blurry that it becomes difficult to concentrate on anything complicated. This adds to my social interaction troubles, since I have trouble looking people in the eyes and find myself constantly wanting to just look at nothing. The blurrier things get, the less real they seem, and as a scientist I'm always struggling to get as firm a grasp on reality as I can manage. As for what's actually happening to my eyes, no one is quite sure and I'm waiting to see my ophthalmologist again. It looks like a filmy layer of tissue on the surface of the sclera near the conjunctiva. It's present on both eyes, and on particularly bad days it can really bubble out pretty far, to the point where it almost overlaps my lower eyelid. It's gross, and I want to get rid of it.

Then there are the gills, which I guess started even before I was on the steroids even though the doctors claim that they think they're caused by steroids. It's clear the doctors don't know what they are. They might just be stretch marks, and while it's true that I gained a lot of weight quickly at some point (because of the steroids inducing uncontrollable hunger), I don't think it was enough weight to account for these marks. It basically looks like my skin is ripping apart in a dozen places or so around my stomach, and under my armpits. The skin feels soft and thin, like it would tear easily, and when I put pressure on it the wrong way it elicits sharp pain. But overall, it's not my worst side effect by any means. It's not very distracting and it's mostly cosmetic and concealable, though I wonder what people at the gym must think. Maybe they think they're tattoos. I can almost trick myself into thinking that they look like a purple flame tattoo. Almost.

Then came the shambling legs, which were bad enough on their own merit and made worse by the fact that I had to travel quite a bit in August. The shambling legs were a combination of several things. First, all of the muscles in my body became incredibly weak, and my thigh muscles were hit worst of all. I literally could not stand up without using all four of my limbs. I had to use both hands on the rail in order to climb stairs, and I had to take a rest after each flight. I live on the third floor of my apartment building, so this was quite unpleasant. Getting from one terminal of an airport to another while carrying luggage was almost too much for me. If I did too much walking, I would have terrible leg cramps, at first only at night (ruining any chance of sleep I had that night) and then eventually even during the day. The worst was the one-hour flight where they never turned off the seatbelt sign and I had a cramp in my leg the entire trip. A normal person would have stood up anyway and tried to walk it off, but I'm nothing if not abnormal. And I was going to SIGCOMM. When you go to a conference, the whole point is to network socially, and that involves walking to bars and restaurants. I did my best, and everyone was accommodating, but it made me feel terrible.

Feeble, frail, fragile. Lots of f words. They describe me physically and emotionally. The last and perhaps worst side effect that I'll bother to mention is the brain fog. It's a combination of mood swings, inability to focus, and general detachment from reality. Basically, there were several times when my brain just wasn't working the way that it should, and (I don't know if this makes it better or worse) I was quite aware of that, perhaps too aware of it. It's the most unsettling of all of the side effects. As much as my body changes, I don't really feel like my body is ME. I'm my thoughts more than anything else. What does it mean for GVHD and my medication to be changing my thoughts? Philosophy, 5:30 AM, etc. etc.

So what was the point of all of that ranting? It's really all about my least favorite emotion: resentment. I'm not really going to get better. For a long time, I thought I would, and everyone else thought I would, and everyone said that. Sure, I'll survive, but I'll always be struggling with these side effects, and part of me resents that I have to go through that when most other people don't. I think it might be the ugliest emotion, even more unseemly than vanilla hate. And I don't know how to respond when my dad asks, "But you're getting better?" for the fiftieth time even though I've told him already in that very conversation that I've reached a sort of tableau in my treatment. So I respond the way anyone would, "Sure, a little bit," and I resent myself a little bit more for lying to him. He doesn't believe me anyway, and he shouldn't. But he asks it anyway.

I saw 50/50 last night with Ted and some friends. I remember telling Ted when we saw the preview for it that I thought the movie was made for me but that I didn't really want to see it. Not because I thought it would be a bad movie, but because I thought it would remind me of too many painful memories. And I was right, it did. There were a lot of similarities between me and the main character, though there were also many differences. I won't pretend that I didn't cry through most of the movie. There were some scenes where I was the only one in the theater laughing, and I'm certain that there were some scenes that made me cry for reasons that no one could possibly understand without going through the experience firsthand. I expected all of this.

What I was really dreading was the end of the movie. Spoiler alert: surprise, surprise, he survives his cancer. There is one scene of him months after his surgery, looking almost totally recovered, and it's the feel-good happy ending that you want. But all I felt was resentment. Why does he get to be completely free of it while I have to deal with what's basically going to be a lifelong condition? It's not the first time I've had this thought. I feel stupid, mean, and petty for thinking that other cancer survivors somehow have it easy because their cancers can be cut out once and for all, but I can't help but feel that deep sense of resentment for the powerlessness of my situation.

I try to remind myself that I'm lucky to be alive at all. It's profoundly lucky that medical researchers have been able to fight a cancer of the blood at all given how pervasive it is. Heck, it's profoundly lucky that life even exists at all, and if cancer is a natural consequence of genetic variation then I guess someone has to get it. I still feel profoundly unlucky though, because I am profoundly unlucky. And I'll probably continue to resent that just a little bit, no matter how hard I try not to.

Achievements

I told myself that I wouldn't post another post on this blog until I published Chimera, and that's exactly what has happened. To remind everyone, Chimera is the fantasy novel I wrote for NaNoWriMo back in November. A lot of comments and proofreading later, it's now available for purchase! I'm really excited about it, because I really enjoyed writing it and I hope that people will enjoy reading it. I'm already thinking about the potential for a sequel this coming November, and I have a lot of good ideas for it. The real question is if I'll have time to work on it.

The point of NaNoWriMo for me was to recover from my bone marrow transplant treatment in the most important way: to become a productive person again. Months in the hospital can really weigh on you. It disrupts your plan for your life, and if you aren't careful, all of those skills, talents, and muscles that you've spent your entire life working on can atrophy pretty quickly. I wanted to reclaim my lost productivity, and NaNoWriMo gave me a solid and fun goal to do that. The best part is that it worked.

Shortly after NaNoWriMo, I had the idea for a mobile app, a sort of modern jukebox where you can vote on the music playing at participating social venues. Then UMD announced a competition, the Mobility Contest, a joint venture between the business school and the CS department to develop a mobile app that improves campus life. With the renewed productivity that NaNoWriMo gave me, I dove in headfirst, simultaneously juggling my research responsibilities and Atmo, my mobile app. Several months of coding later, I won the second place trophy and a giant check for $2000. It was great, and exciting.

Although I have been very productive and very successful for months now, I've kind of run out of steam. I put on a bunch of weight - from my medication and eating habits, not because I've been working hard - and have been feeling a general weariness that makes it difficult to do any work outside of the time I typically reserve for research. This is becoming a problem, because Atmo is turning into a full-fledged business, I'm the only developer for it, and there's a lot of work to do for it still.

I've started waking up earlier and doing Wii Fit daily; I'm hoping that I can turn that into some momentum to get my life (and my fitness) on track again. I've started walking to and from work instead of taking the bus, now that it's warm out. I'm always taking the stairs instead of the elevator. I've only been doing all of this for a week now, but I'm already feeling the results (even if I'm not seeing them yet). I feel sharper, more focused, and I have more energy in general. The only problem that this isn't solving is my eye problems. GVHD can apparently give you chronic dry eyes, and even though I'm on Restasis now it doesn't seem to do much for me. I can stare at a computer screen for about four or five hours before everything starts getting blurry and my eyes start to ache. So even when I feel good enough to do more work, it's often very difficult to do so, and I find myself doing stupid things like coding with one eye closed. This is one of the harder changes to adapt to, but I'm working on it. I'm nothing if not adaptable.

I have to admit that part of the reason I did the Mobility Contest was for the money. Medical bills really add up over time, so I thought it would be good (and perhaps necessary) to boost my income. This was especially relevant because Ted had a lot of trouble finding a job. It took him about a year, but he finally got the job that he wanted with the Department of Defense. It pays really well, so I'm far less worried about our finances than I used to be. However, we did just get a new car (so that he could get to his new job), and that's going to be pretty expensive for a good long while. We need a bit of time to see how our finances are going to be in the long run, but in the meantime you can always help by buying that book I mentioned, or by pointing an Angel investor our way for Atmo.