Tuesday, August 19, 2014

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?

Wednesday, August 13, 2014

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.

Tuesday, August 12, 2014

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.

Thursday, June 05, 2014

and it's getting nearer, soon it will all be true

As the Monty Python quote goes, 'I'm not dead yet.'

Real life pummeled me but good the last few months, the final push before residency ends intermingled with personal drama. Distracting me from the 'what's it all about' that usually occupies my mind at times like these. Because in my life, because of these odd back roads I've taken to get to where I am, there have been a lot of beginnings and endings, or chapters, if you will.

I've had this theory, and maybe it's a theory that only applies to my life, but I think there are but a few people you can hope to carry along with you as precious from every chapter of your life. I've always held this belief, but I think it's become more nuanced for me now. Because there are people in my heart from different chapters in my life nowadays who I haven't spoken to in years- and that is okay, because such are the realities of life, time zones, delineating circumstances.

Even though I've always had this theory, I think I expected to come away from medical school with a solid handful of people that were mine. Instead, it turned out to be one person, and it wasn't the person I expected. But it was the person who probably understood me (and still understands me) the best from those days. There were other people to whom I thought I was closer. But they faded away, or turned out to be false, or whatever it was that actually happened- they were gone in the end.

When I started residency, I was more wary. I expected to just keep my head down and work. I didn't take stock of the other residents the way I did in medical school. The work was plenty enough to keep me busy, too busy to worry about likemindedness and comraderie. And then- it just happened. And still, it took a while, it took some evolution, some shuffling of chairs, but in the end, there are more than I expected who really get me.

Sometimes I wonder how much of that is the world, and how much of it is the barriers I put up against the world. I've always been someone who gets blue and brooding when people don't understand me, even while knowing that part of the reason is that I don't explain myself, I don't show myself. I think the maintenance of this blog over the years is probably a perfect example of that- I very much doubt most people who know me IRL would guess that I spend (well, used to spend) time writing, contemplating, musing. And that has always been okay, because I haven't necessarily needed someone to understand everything about me.

Yet, I have to say, it's something. It's one thing when you're in a romantic relationship, and someone puts up with all your nonsense. But it's quite another to have friends who have seen you at your worst, when you're really on the verge of falling over the edge, and for them to have this breathtaking grace of being there for you. Not just that- but letting you be there for them too. The latter is something I've realized more and more as I've gone through my medical training. It may be the only thing I've really, truly come away with, this bit of wisdom- that you are doing your loved ones a favor when you let them help you in any small way.

I suppose that's what I have learned from taking care of patients these past three years of residency too. A lot of residents get burned out, talk about how thankless the work is, how the benefits have now been outweighed by all the burdens of medicine. I get that. But I have spent time talking to my patients, talking to their families, discussing impossible decisions about the last days of their lives, and I never feel like it's a weight on my heart. It's a strange profession these days. Patients have increasingly unrealistic expectations of their doctors, and doctors in turn have unrealistic expectations of their patients. I've realized that so often, patients actually are really in charge of their own health. And I've also realized that they deserve the credit more than I do, more often than not. But none of that really matters to me in the end. I just like my job. I like the being there. They need me, I need them, whether either of us likes that.

Anyway. I'm getting my head screwed back in straight, and I'll try to blog more. But it occurs to me that the blog has been this strange chapter that is separate from the rest of my life, that intersects other chapters, neither a prequel or a sequel, almost just the same tale told in a different voice. And this chapter too- I'm lucky to know some of you from this chapter, I am sorry if I have taken some of you for granted, but you mean a lot to me too.

Monday, March 03, 2014

don't you waste me in the ground

Strange things I've realized of late. For one thing, revelations always seem to occur when I work in the ICU. Let me be clear- I don't enjoy being in the ICU. It's not my thing, patients that are that sick and that tenuously sick- in the sense that they may, at any moment, turn the corner from sick to threatening to die. And yet, aside from working with cancer patients, the ICU is the only other experience I have with talking so openly and frequently about death.

A woman today said, "I don't know how you all do it," and it was meant to be a compliment, but I could not stop thinking about it as also a little bit of a criticism. The woman was the wife of a patient we were taking care of, who was not doing better, who had been quite clear about his intentions and wishes, and who we had just decided to extubate to let nature take its course. People have this impression that when you are "on life support," it is simply a matter of turning off the machine or taking the tube out, and then death follows. But like everything, it's not often that simple. I had just finished explaining what the process of taking the tube out would look like, what might happen afterwards, although we often can't even predict that. There is so much research out there in medicine, and yet that moment of death and dying remains mostly a mystery- people hang on unpredictably or pass just as unexpectedly.

But here's the other odd thing I've learned during the course of my residency. It's not really about what's happening, the details of it. As physicians, especially when we're in training, we have this tendency to fixate on that, the specifics of the problems a patient has and how we are failing at fixing them. This morning, the intern on the team presented the patient's problems and our plans while the patient's wife stood nearby. His wife then turned to me and said, "I didn't understand a word of that." After explaining to her what was going on, I went back to see her with the attending, and that's when we talked about his overall goals, and decided it was time to focus on his comfort. When she said, "I don't know how you all do it," she was grief-stricken and wondering how we saw such things regularly and treated it like a matter of course. I wanted to tell her that inside, it doesn't get any easier. That it haunts us too, that we couldn't make him better. That every patient we admit afterwards, we treat with all the more reverence, knowing how challenging healing can be in the very, very ill patient. I wanted to tell her too that sometimes I don't know how I do it either-- not in a conceited way but in the sense that I don't know why I'm not in therapy or in a deep depression over the things I have seen. Let me tell you- the ICU is 50% hopelessness, 25% idiocy, and 25% success. That's probably a generous estimate of the latter, by the way.  I can't explain why, in the process of training, you learn to just deal with these realities of treating patients.

In the end I didn't tell her any of those things, because yet another thing you realize about death is that, as a physician, it's definitely not about you. Your job is to walk the balance between being there and staying out of everyone's way in those final moments.

Of course, then I go home and bake three dozen cookies, and realize that, oh, all of this does most definitely affect me. Which brings me to the much smaller realization which dawned upon me today. Lately, some of my friends/co-workers have been suggesting coming over to bake with me, or for me to come bake with them, and the thing is- I don't want to. I'm not trying to hide trade secrets or anything. It just occurred to me today that I don't really like sharing the process of baking with anyone because I find it relaxing, and it's one of those selfish things, almost like my form of meditation. I can't really imagine finding it so peaceful if someone else was there. Which probably says a lot about me and my attitudes about people, come to think of it.

Anyway, more navel-gazing at some future date. I have some more hopelessness, idiocy, and (hopefully) success to face in the morning.

Monday, February 17, 2014

no single bite could satisfy

Lately I haven't been traveling to faraway places. I have not really had much vacation time, but also the motivation has been sorely lacking. There are lots of reasons. Probably, primarily, just sheer exhaustion from residency. It's tiring and I don't like to drag when I'm at work-- so I will work my 30-hour shifts, while grumbling all the while, mind you, but at some point, it all catches up to me, and when I want to decompress from it, the idea of going on an involved vacation seems more wasteful than anything else.

But not to whinge. Because honestly, I am well aware of my good fortune. It just so happens that I live in a place that allows me to get to plenty of what I want and need. A stay-cation is all the way justified around here, because a short drive gets me to the ocean, the mountains, the vineyards, and my niece.

Even then, I did some real staying. Some time at home in my kitchen, and now I am well aware of my age, because I was much more pleased to spend a day tinkering around with making pie crust than I would have been flying somewhere.

I bake a lot because it's something that's actually become rather expected. And that's fine, because it still doesn't feel like an obligation, but rather a routine, that has a soothing quality to it from the very rote of it. But every so often, the scientist part of me itches to experiment, and I want to learn some new technique or try some new recipe. It matters to absolutely no one; I have no delusions otherwise. It's not like I'm becoming an expert at anything, and it's not like anyone else cares about any of this.

But that's part and parcel of the decadence of it all. It feels like the height of luxury, the day I spent rolling out pie dough, and learning to make pastry cream. I might have cursed at how small my wooden rolling board is, and how one of my whisks malfunctioned. Maybe I groaned at the batches of macarons that failed before I got to one that was passable. You would think that would make for more frustration than relaxation, but for some reason I have made my peace with failure. At least in the kitchen, I look at every failure as just a finding from an experiment- troubleshoot, tweak, try again. It's actually a comfort now when something fails the first time I try to make it-- then when I've figured out why and gotten it to work, I know it wasn't just a fluke. I know I can write it down and it will keep.

But still. A person likes to feel some sense of hope. So I ended that day by cooking up an industrial batch of salted bourbon caramel, which I knew would turn out - because I had failed at it in the past, of course.

Monday, December 16, 2013

it's my dream but it's yours if you want it too

The arrival of my niece has not changed my life. I didn't meet her and suddenly have a baby-fever type of revelation. She didn't make me question all of my choices and doubt all the decisions I have made in my life. She turned up, all six pounds of her, to happy parents, and I laughed at almost every thing that came out of the bro-seph's mouth. When she was a day old, he remarked "she's got a really chill personality," and I didn't have the heart to tell him that actually she was just a newborn baby. My mother turned up 4 weeks later and complained that the baby didn't play much, that she slept all the time. The woman has started her unrealistic expectations now, so I fear for that baby's adolescent years.

She looked like a wrinkly alien when she arrived, my niece. She wasn't some angelic perfection (shh, don't tell my brother and sister-in-law). And also, she's not the first baby born to people I love. I have two godsons, and many of my dear friends have had children, and I am happy for every single one of them.

But when my niece showed up and settled into my arms, I did have a strong reaction all the same. Funnily enough, before she was born, I had this irrational thought that maybe my brother and sister-in-law would hoard her, and would find me an annoyance. It was completely and totally and absurdly irrational, as it turns out. Because, for one thing, there was something my brother and I learned growing up-- there is simply no such thing as too much family.

We grew up surrounded. Two uncles, two aunts, their spouses and children, all living in a one mile radius of us. My brother and I were the oldest but it didn't detract from the importance of their presence. There was quarreling alternating with teasing. There were equal measures of tears, bruises, and laughter. And I remember, when I was younger, finding it all very suffocating-- like nothing I ever did was mine, because so many other people were involved, talking about it, their expectations adding more pressure, their bragging about anything I'd done somehow diminishing anything I did as wholly my accomplishment.

My niece arrived, and I knew I wanted to be geographically close to her if at all possible, because my brother and I grew up with the idea that you needed as much back-up as you could gather around you. And the problem then was that I wasn't sure I'd actually be able
to stay around, because that was somewhat out of my hands. Some friends, trying to make me feel better, kept telling me that being away from my niece for a couple of years would do no harm. "They don't remember anything at that age" and all that. But thing is- I knew that to be false. I can't tell you why, I don't even understand it myself, but I can tell you I'm very close to those twerp cousins who I cradled and played with and babysat in my teenage years-- they're adults now and we all live far apart, but when we get together, there's an unmistakable closeness that I treasure.
Circumstances are what they are. I would have had to deal with it, had I not lucked out, had I not been able to stay. I learned that from my extended family too- time came and they had to do what they had to do. I struck gold though with this little niece of mine. I've got a brother and sister-in-law who want her to know her foi as much as possible, and I get to stay near enough that I can see her frequently enough to be a part of her life. Looking at that kid, I did feel a sense of responsibility- to not drop her, to hold her when she fusses even if it's spoiling her a bit, and all that other unconditional stuff that comes with family. But also there's a different kind of responsibility- to find as much joy in my life, to share that with her and as many others as I can.

So the little pipsqueak did teach me something already. She reminded me what I already had known- that there is no such as too much family. Her arrival coincided with some big news in my life that was good (actually, great), and when there was this amazing outpouring of sincere happiness on my behalf, I realized what an idiot I was when I was younger and found sharing my accomplishments to lessen them. It's exactly the opposite as it turns out: knowing that so many people have supported me, have cheered me on, have held their breath on my behalf, have known what this means to me-- it's actually amplified my own happiness, and made me feel wrapped in a collective embrace that I had not known was there.

Some of that family who've been part of that embrace, they're family not by blood but by love. Some of them are you.