your position is pivotal

For the past week and a half, I've been trying to figure out why the ALS ice bucket challenge is bothering me. Initially, I thought it annoyed me because it was one of those typical online activism deals that lull people into thinking they're doing something when they're really not. But that's not the case- the challenge asks people to donate and raises awareness and has significantly increased research funding for ALS.

And we live in very exciting times for ALS and other neurologic conditions. It's a field in its germinal phase, with so much to be discovered, so there is very real hope that with proper funding and devotion of research efforts, there could be better treatments to these very debilitating conditions.

So raising funding and awareness for ALS should not upset me.

Yet it has been upsetting me. All of this week and last, it has been upsetting me. Then I recollected something.

This was in the late 90s, and I was working on the east coast, and I had this coworker MM who was Serbian. At that time, I'll be quite honest, I didn't even know that. I thought I was a real hotshot for knowing she was Yugoslavian. So it was coming on the weekend, and somehow I was always the person trying to goad us bridge & tunnel crowds into Manhattan to do something, and that weekend was no exception. Friday night, we were young, I sent out an email to a bunch of my friends and coworkers asking them to go out dancing. Everyone wrote back except for MM.

Finally, the day before we were going to go out, I'll never forget, MM wrote back a short, but positively scathing reply, and I'm paraphrasing here, but she wrote something very close to the effect of 'how can you expect me to go out dancing when NATO is bombing my home town?'

I still remember this very short, very sharp email to this day because I recall that I felt sucker punched by it when I received it. At first, I felt certain I was the victim. I was just trying to get some friends together. I wasn't in charge of those bombs being dropped. Not like they asked for my vote. Not like I would have voted for it if they had. My, she was sensitive, it seemed. And given that there was nothing any of us could do, what would be the harm in going out and having a good time?

Well. Wasn't I an idiot in my youth?

There was nothing wrong with sending out an email to go out dancing, or wanting to go out dancing, even in the context of bad things happening elsewhere. If we all froze every time something bad happened in this world, something truly horrifying even, we really would mostly be homebound and petrified.

But, there was also nothing wrong with MM's outburst. In fact, it was a 100% justified reaction, and it was borne of anxiety and heartbreak and horror. And her outburst was an opportunity. To understand. To reflect. To learn. Not that she was supposed to be the great Serbian educator, spreading her knowledge of the situation there to all her little disciples. In fact, MM and I never talked about it except that I wrote back a short apology, which she accepted just as briefly, and never did we speak of it again.

It was my job to figure out why the whole situation was so upsetting to her, my job to get it. From her vantage point, it was so obvious that even questions about it revealed my ignorance and unmasked her frustration further.

I know it's quite a leap to make. But for me, when I see those ice bucket challenges on Facebook, I want to write back to all of them with a similar terse rage-filled reply of "how can you ask me to throw an ice bucket over my head and raise awareness for ALS when an entire subset of our population is being mistreated systematically?!?" And I sort of don't feel like explaining myself any further. I suspect my rage pales in comparison to that of others. But it's the job, our job, to acknowledge that rage, to get to its roots. Ignored, it just grows exponentially.

***

Here are some statistics. Something to mull over.

- The reported incidence of new diagnoses of ALS yearly is 5,600 in the USA.
- It is the cause of death in ~2 of every 100,000 deaths in the US
- Who predominantly develops ALS? White men.
- In New York, just New York, in 2013, thanks to stop-and-frisk and other major problems with the alleged protect-and-serve police force, New Yorkers were stopped by police 191,558 times.
- Of those, 88% of them were totally innocent.
- Of the total, 104,958 were black. 20,877 were white.
- According to census data, in 2011, the death rate for non-Hispanic white men from ages 25-34 was 147.5 per 100,000. For black men ages 25-34, the death rate was 212 per 100,000. I repeat: 147.5 vs 212. Make that non-Hispanic black men and that rate goes up even further to 226.7
- By the way, you know how ALS is the cause of death in ~2 of every 100,000 deaths in the US. Guess what causes ~10 of every 100,000 deaths in the US? Injury by firearms.
- A baby less than a month old - 3.45 white babies of every 100,000 die. 7.45 black babies of the same amount die.

So you know. You tell me what needs more awareness. You know... it's not a zero sum game, sure, but then again, it kind of is. That's how things work. That's how our current media environment and our current social environment works. The most popular, the most sensational thing, it bubbles to the top and everything else fades. It's not wrong- to raise awareness for ALS, to engage others in the same attempt.  You're entitled to your celebrations about the money you've raised. But so am I entitled to my rage about the tradeoff, about the things that are ignored in preference.

But I really just wonder. There are plaguing questions that irk. Like mainly-- why isn't every single person who is raising awareness for ALS raising awareness for the inequities that are simply unacceptable in this country, in these allegedly modern days?

dirty his hands, it comes right off

This is just a quick additional thing I have to get out of my head. A couple of years ago, I was sitting in a seminar about racism, institutional and otherwise, sitting with a bunch of very bored interns who were suffering through it as a necessary evil. Many of them thought it was a waste of time. I was inclined to agree with them, mostly because I don't think the seminar changed anyone's outlook, since it was preaching to the choir for some of us, and easily tuned out by the rest.

Anyway, though, there was a statistic that was quoted, and I'm not going to quote it correctly, and I'm too tired to hunt it down. But it had to do with the amount of time people spend thinking about race. The result of the research showed that the average white person thinks about race hardly at all compared to a person of color who thinks about race several times a day.

And that is very, very true. I think about that every time someone makes the always-irritating 'I don't see race' remark, because that is such a sign of privilege, to have the luxury not to think about race. I always just want to reply, 'how nice for you.'

It's exhausting. I truly, honestly despise how often I think about it, about being not-white, and not-male. And let me tell you, I myself am speaking from a place of extreme privilege, I am well aware. I have never been treated ludicrously by the police. I have not been shot. I have not been tear gassed. I live in a part of the country where I hope we would not tolerate this Ferguson noise. But then again, there was Oscar Grant. So who knows really.

And that's the thing. We just can't stop thinking about it.

hot water bleeding the colors

It would be so easy to return to blogging by talking about the new television show The Knick, which filled my head with thoughts for its full one hour.

It would also, in a different way, be easy to talk about the death of Robin Williams and talk about depression. Even though it would be an uncomfortable topic, and it would get too personal, too quickly, it would be easy because it's familiar. It's something I understand all too well. When people write of his death as sudden or shocking, I'm not sure I share that sentiment. Yesterday was a sad, sad day for the entertainment industry, and for those of us whose first taste of American television was Mork & Mindy, but it was something, nevertheless, I understood. Depression is a horrible disease; so is cancer. But it is a disease, and I understand it, and I know how not everyone can survive a disease over time. I know that all too well in my business. I know that all too well personally.

But what is much harder to write about, because I can't write about it coherently, not even a little bit, is this goddamn useless excuse for a country. See, that's the garbage that comes bubbling up into my brain when I start thinking about Ferguson. It's not just Ferguson. It would be so convenient, and it's the way of the mainstream media to always make it just about Ferguson, or just about Trayvon Martin. Special circumstances. A one-time thing. Complicated.

See. But it's not that complicated. It's just simply horrible, and I can't write a sensible thing about it, not one, because all I see is rage and ugliness and this frustrated, weary, defeated anger. Like I just give up. Like who would ever have a child in this country? Like who bothers to fight in this stupid system?

There's something that's happened to me in the last several years, since I have become a physician. It is a bit different from the normal course of a physician. Because most people start medical school when they are quite young and they are just forming an opinion of the world. And so they have some opinions, perhaps, and then they have many more based on their experiences in the medical profession. For me, it's been a little different. I knew who I was when I went into the field of medicine.

But here's the thing- I knew who I was, but I didn't know who other people were, not completely. Oh I did for a little while. For a brief period of time, I worked in a research lab in New Jersey, and I was the little meek Indian nerd mixing solvents in the corner, and because I was quiet, I would hear all manner of ridiculous talk about forming a militia and Hilary Clinton being too big for her britches (this is back when she was the First Lady, whooo hoo, the memories) and how people were making too big of a deal about this OJ thing. But that was just a brief glimpse, and I thought they were just some lab nuts, because I got into the corporate field where people largely keep such opinions to themselves. And then I moved to San Francisco, and at that time, people were comparing Gavin Newsom to Ronald Reagan so I was working with a bunch of folks who were genuinely, truly surprised Kerry lost the election.

So I wasn't really prepared for what happened when I became a physician. I had always been a little bit of a listener, because I was always interested in what people were really thinking, and I had found that if you kept your mouth shut for long enough, people's true natures would come out. So the last several years, well, I have seen some things. It's a weird relationship. People just give you their two cents. I don't know why. It's not like telling your doctor that climate change is a hoax has any bearing on how they treat your diabetes or your multiple myeloma. Still, I don't know, I guess because it's a safe space, when that door closes, when it's just you and your physician, the truth must out.

I don't know why I'm writing all of this down. I guess to say- I've seen inside the minds of a lot of people, and we're broken. Not all of us. But more than there should be. It's 2000-and-freaking-14 and I've still got to listen to a pack of white men tell me that Obama's a racist who only cares about black people. I still have to patiently explain to these old white men that I was born in America, and even after I've explained that, they've still asked me if I "plan to go back to India?" Oh, but it's so, so much worse than any of that. My colleagues have made disparaging racist remarks- which they attribute to working in an environment where we see minorities 'take advantage of the system.' Bull-freaking-shit. The system has taken advantage of them. Our entire system is so broken that our most vulnerable population, socioeconomically, racially, are set up to be the sickest, and to have the least access to proper preventative healthcare.

This is around the time that my brain starts to feel close to stroking out.

There is subtle stuff too. Like how the white male in a program is encouraged and mentored and pushed to succeed, while the minority is scrutinized or left to his or her own devices. But there is just that one case, right? It doesn't apply to every place, right? There is subtle stuff in treatment too, like how there are disparities in the outcomes of non-white patients, but ohhhhh, we can't attribute that all to racism. It's just one study. It's just one outcome. And then another, and then another, and then how many apples have to hit Newton on the goddamn head before he starts to think there's something to gravity?

This is why I haven't written. I can't. Not without losing the thread, without going off kilter. I can't talk about it, because I would be dismissed as ranting. Or better yet- a hysterical woman of color, that's pretty much the best way to get invalidated out there. And anyway, I don't know what to do anymore. I don't know what it will take to change things. I don't know if anything will change. Whatever is all I can summon to the audacity of hope. You be audacious. I'm inconsolable, and angry, and defeated, and I don't even know what I'm trying to say anymore, so I'm just going to stop. But not in my head. I'm not going to forget Brown or Martin. I'm not going to forget the Japanese kid who got shot for jaywalking when I was in graduate school (a solid 10+ years ago, in California, I might add). I'm not going to think of them as just one case.