PFAM: Write Myself a Letter

24 April »

Welcome to Patients for a Moment; this month, I asked participants to write a letter to their pre-illness, pre-diagnosis selves. This proved to be a challenge that very few people were up to (and scheduling the deadline during a holiday week did not help, surely). But two brave and diligent bloggers met that challenge, producing a couple of powerful and poignant posts:

First, Sarah Hackley from The Migraine Chronicles wrote “An Open Letter to My Pre-Migraine Self”:

Yes, you are going to suffer. Yes, you are going to run up against the edges of what you can take, emotionally, physically, mentally. But, guess what? You are going to arise stronger, more authentically you.

Next, Shruti at Lifestyles of the Ill and (Mostly) Blameless wrote “Return to Sender: A Letter to My Pre-Illness Self”:

Live your dreams, but think of some backup dreams just in case. Fight for your dreams, by all means. But remember that some things in life can’t be found no matter how much you fight for them. Sometimes it’s necessary to have back up dreams. Welcome to the real world, I hate to be the one to usher you in.

That’s it — a short edition, but these are two excellent posts, full of wisdom and insight that I wish someone had shared with me before I got sick. Thanks to Shruti and Sarah.

Next month’s host is Leslie at Getting Closer to Myself.

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Diseaster’s Greetings

15 April »

I don’t think disease makes me a bad person, but it might make me a bad Christian. As a Christian, I’m supposed to think  Easter is the most important holiday ever. As a person with chronic illness… well, let’s say I’m not impressed.

The point of this is not that I am a good Christian; I am a practicing Christian in much the sense that Ruby the elephant was a practicing artist. Which is to say you can do a lot better for exemplars in this world. And if you aren’t a Christian, I am fine with that. This post is about confession, not conversion.

As a Christian, I celebrate Easter — when we commemorate the crucifixion, death, and resurrection of Jesus. The actual Easter Sunday marks his resurrection; Good Friday is the day when he was crucified and died, but we call the whole thing Easter. We mark this miracle with ham and asparagus and jelly beans.

If you grew up Christian, your church leaders probably made a huge deal about how awful the crucifixion was, and how much Jesus suffered for our sins on the cross. The deal was, you were supposed to feel super sorry for how awful Jesus suffered, because it was your naughty nature that put him up there.

The older and sicker I get, the less compelling that story is. The more I learn about the crucifixion, and the more I suffer my own illness, the less impressive Jesus’s ordeal seems. I know that’s a horrible thing for a Christian to say, but I can’t not think it.

For example, do you know how long Jesus suffered? Six hours. That’s it. Six hours. Less than a work day. Less than a Lord of the Rings trilogy marathon.  I’m sure it sucked, but six hours? That’s it?

And Jesus knew this was the deal: the night before, he went to Gethsemane to complain about it to God — “if thou be willing, remove this cup from me: nevertheless not my will”. He prayed hard not to get crucified: “being in an agony he prayed more earnestly: and his sweat was as it were great drops of blood falling down to the ground.”

I look at it this way: my life isn’t great, and my death probably won’t have any real meaning. So if any reasonably credible major deity told me that six hours on the cross would free ALL HUMANITY from sin and death, I wouldn’t spend a moment moaning about. I certainly wouldn’t sweat, much less sweat blood.

What I would do is show up early and bring my own nails: you know those Romans are going to use whatever rusty spikes are knocking around the bottom of their toolbox, and I’d want the hard part over with before it got too hot. What’s Latin for “let’s get it on”?

The other part of Easter, of course, is that he “descended into Hell”, ostensibly to suffer for another couple days — again, for our sins). Thing is, my sins are plenty to fill two days in Hell — and I don’t even drink. I have no idea what you weirdos have been up to, but I doubt Jesus made a dent in my backlog. I guess I should be worried that two days was all Jesus could take, but then… six hours?

Then Jesus comes back — from Hell — but he comes back with holes in his hands and his side. That is, he enjoys what we call ‘bodily resurrection’. This is another idea church people find super exciting: you’ll come back from the dead, in your body, only better. That’s great, but pretty clearly Jesus came back from the dead in somewhat less than sterling condition. If the Son of God still has a hole in his side, am I still going to have an ostomy? Do they have Cymed in heaven?

It might be pretty obvious, but I’ve let my religious discipline slide lately. Church has been hard for me: I’ve felt a bit marginalized from my community of faith, partly because of my illness and the things I have to do to accommodate it.

But the other part, and maybe the worse part, is that my Bible doesn’t really speak to my condition, to my life. There’s one verse in the whole thing that really resonates with my experience of illness, and — hint — it’s nothing to do with Easter. I can joke about ‘bodily resurrection’, but the idea actually scares the crap out of me. So Easter for me is a time of incredible cognitive dissonance, full of ideas that do not comfort me at all.

Don’t get me wrong: I believe the Easter story, at some level. Don’t ask me to nail down exactly what I believe, but to me the miracle of Easter isn’t that Jesus rose from the dead. These days, that’s only a notch or two above Criss Angel Mindfreak-level shenanigans.

For me, the miracle is that six hours was long enough to matter — and I’m not all that sure I believe it.

So if you’re a Christian, happy Easter.

If you’re sick, happy Diseaster. I know I’m not the only one celebrating alone.


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Patients for a Moment: I’m gonna sit right down…

8 April »

…and write myself a letter.

The prompt for this month’s Patients for a Moment is simple: write a short letter to your pre-illness, pre-diagnosis self.

What do you know now, that you didn’t then? What should you have done then, that you can’t now? What did you fear then, that you don’t now?

Submissions should include:

-Your name

-Your blog’s name

-Your  post’s name

-Your post’s URL

Deadline for this month is April 18th.



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The Breaking Bad Prednisone Episode

31 March »

I’m binging on Breaking Bad  and discovered what might be the best (only?) depiction of the effects of prednisone ever shown on TV.

The episode is “Over” — Season 2, episode 10. In the previous episode, “4 Days Out”, we learn that mild-mannered meth chef Walter White has ‘radiation pneumonitis’: the radiation treatments have inflamed his lungs, even though they put his cancer into remission. White’s oncologist tells him he’s going to prescribe prednisone for his pneumonitis, and doesn’t warn him about the side effects.

So the next episode, “Over” starts with Walt trying to adjust to his new prognosis: he thought he was dying, but he has to live. At first he’s happyish, though bewildered. Then he turns angry, at a party his wife throws for him. The next time we see him, he’s relatively happy again.

Walt then spends most of the episode on home improvement. He starts off replacing the water heater, deciding to purchase a top-line tankless model. After that is installed, he discovers rot from the old, leaky water heater — which sends him under the house to remove and replace the rotted structural beams. The project consumes him, to the point that he skips work to keep at it.

Breaking Bad is about a guy going from high-school teacher to drug-dealing supervillain, so you would think an episode in which the main character spends most of his time on home repair — including three visits to the hardware store — would be irrelevant to the whole becoming-a-malevolent-person theme. Also boring. Why is it important, or even interesting, that Walt is repairing his house?


The manic-depressive mood swings, the incredibly bad impulse control, the obsessive focus on a pointless project — these are all common side effects of prednisone. Prednisone explains everything. The drug isn’t even mentioned, but it’s as much a part of this episode as meth is. Prednisone makes Walt pissy, makes him tear apart his house, drives him back to the hardware store over and over.

Sure, it’s possible this is all coincidence: that we’re meant to get something else from the episode. But anyone who knows prednisone will recognize in Walt’s cheery obsession with floor rot that somebody involved with this episode knew exactly what they were doing. Somebody involved with the show has taken prednisone, or has watched someone undone by the drug. (I reached out to the episode’s writer, Moira Walley-Beckett, but she never replied.)

Prednisone is the point of this episode, driving it into Walt’s unmaking. When he makes his last trip to the hardware store, and bumps into an aspiring meth cook loading up on supplies, it’s prednisone telling Walt to confront the competition. It’s prednisone giving him crazy enough to scare aware the cook and his partner. It’s prednisone that turns him back into Heisenberg.

This is all done so subtly, so carefully, that you can watch the whole episode and miss it. They don’t mention prednisone in the episode, much less explain how it affects Walt. How brave, how badass is that: to bury a crucial plot point so deeply that 99% of your audience won’t get it? That is some creative risk-taking, right there.

As far as I know, there has never been a cinematic depiction of the effects of prednisone. “Over” is the best I have ever seen, and most people missed it. And though I would be surprised to learn prednisone overshadows subsequent episodes, it is still worth considering how far into the show Walt’s behavior is affected by the drug.

How much is Heisenberg meth, and how much pred?


Patients for a Moment: What’s your favorite book about illness?

21 March »

For this month’s Patients for a Moment, I asked: “What’s your favorite book about illness?” I didn’t get many responses. In fact, I only got one real answer.

Barbara Kivowitz at In Sickness As In Health wrote that her favorite book about illness is Susan Sontag’s Illness as Metaphor. This is indeed an excellent book, a classic that every patient should read.

If I had to guess, I would say the reason I got so few responses is that there aren’t many books about illness — meaning chronic illness — and there are still fewer good books about illness. The experience of chronic illness is not well understood by literature, or even culture more broadly. Can you think of a fictional character whose experience of illness resonates with yours? The only answer that comes to mind for me is Snowden, the doomed airman in Heller’s Catch-22, spilling his guts in the cold, thin air — and he wasn’t sick, just shot up.

Granted, there are lots of books with sick people as tropes, your Afflicted Saints and Deserving Sinners — but those stories do not speak to my experience, except to insult. There are plenty of memoirs about diseases teaching the author the meaning of life, or unconditional love — but I’ve been sick long enough to know better. There are even humor books, full of placebo jokes that don’t really help anyone — just anesthetize.

There are very few good stories about chronic illness. This is a problem both in terms of how the world sees us and how we see one another. Obviously, if our culture does not talk about our experience, we cannot expect anyone to even pretend to understand us. I feel like, if you’re sick, that vast absence should at least make you a little bit angry.

But worse than that, if we do not have stories to tell one another, we do not have an identity as a community. Our stories can take many forms — and our blogs are crucial, in that respect, but they lack the power and presence of books. For that matter, I could have asked for favorite movies or TV shows, and I expect the result would be about the same. We have no myths, no heroes, no history as exiles from the “kingdom of the well”, to quote Sontag.

If you want to marginalize a group, to exterminate an identity and eliminate a people: erase their stories.

Or prevent them from ever creating any — and what prevents us as sick people from sharing stories is the idea that our diagnoses differ all that much. This is the consequence of a blindly clinical approach to illness, as opposed to a social understanding. I have been blogging for six years, more or less, about this problem — it is exactly the reason I started PFAM — and it is still frustrating.

To wit, Amy Tenderich and Mike Hoskins at submitted a review of Kerry Sparling’s new book about living with diabetes, Balancing Diabetes. They did not say, ‘this is our favorite book about illness’, but it is at least a book about an illness. Kerry is a friend — she blogs at Six Until Me — and I am glad she has a book out, but my guess is that approximately zero people reading this post will buy her book. (And it’s too late to enter the giveaway.)

Which is too bad, because her subject matter will seem familiar to people with other diagnoses: “familiar D-topics like growing up with diabetes, exercising, sibling relationships, parenting with diabetes, work and travel, school and friendships, going off to college, diabetes advocacy, and the fear of complications.” All that stuff could resonate with a wider audience, but the D might as well stand for ‘divisive’ — focusing too closely on the diagnosis keeps us from appreciating the experience of illness.

I know Kerri has worked hard to build an audience around diabetes, and this book is for that audience, and I don’t begrudge her that. I’m just frustrated that I asked, “what is your favorite book about illness”, and this is the answer I got. Maybe I’ll get a copy for my diabetic tabby; she struggles with the exercising part, for sure.

Along similar lines, Shruti at Lifestyles of the Ill and (Mostly) Blameless submitted a review of How to Be a Friend to a Friend Who’s Sick — giving it 3 of 5 stars, from which you may infer it’s not her favorite book about illness. This isn’t even a book for sick people, really — it’s for our friends and family and loved ones, and it seems like it would be very helpful in that respect. But it’s not about us. It’s not ours.

The second part of this month’s PFAM was a new thing, The ILLiteracy Project, that I wanted to use to talk about the stories we tell about illness. For the first installment, I chose Laurie Edwards’s In the Kingdom of the Sick — first because it is an excellent book about illness, and second because I know a lot of bloggers have read it.

Incidentally, if anyone asks you what your favorite book about illness is, you cannot go wrong with In The Kingdom of the Sick. I have read it, and it is my favorite book about illness. 

Anyway, I did not get the conversation I wanted about Laurie’s book, and I feel like recycling reviews would not do her work justice, so TIP is on hold for the time being. I apologize to those who submitted, but I do want to have this conversation and I will try to do something with your reviews at some point — just not today.

Thanks to everyone who submitted. I apologize if this edition seems rant-y, but I really do believe our stories matter, that they are important to how we understand our lives with illness.



How to lie about illness (with integrity!)

19 March »

You probably already lie about your illness. To wit: “How are you?”

“Oh… fine.”

Sound familiar? Don’t feel bad about  it. We all do it, to some degree or another. Sure — you may be radically open about your illness and symptoms, and that’s great — but I’ll bet that sometimes, for some people, you give them less than 100% of the truth.

The trick to lying about illness is perspective. Remember Obi-Wan Kenobi from Star Wars? After he got caught lying to Luke Skywalker — that Darth Vader killed his father — Obi-Wan defended himself by saying it was true “from a certain point of view.” Same thing for illness. Telling an honest lie about your illness simply depends on appropriate perspective.

“How are you?”

I hate this question with the fiery hate of a thousand bursting suns. The answer is never, ever going to be ‘fine’. So to avoid all that, I’ve come up with an answer: “Well, I’m not dead yet.” Which is true, actually. It’s not at all a lie. The lie is that I say it with a mischievous grin on my face, like it’s hilariously hyperbolic, which it hardly ever is. The fact that I am not dead yet is hugely important in my life, and I am lying by pretending it’s a joke. It totally works.

“What’s that there?”

When you have to take medicine in public — e.g. with meals — people are sometimes too curious for comfort. So the pills and powders I take end up being “vitamins” or “supplements”. Technically, that’s a lie, but I don’t really know how vitamins and supplements actually work, so in theory my medicines could be sort of the same thing. Right? I mean, who’s to say that prednisone or Remicade could not also be called supplements? Well, sure, the FDA — but now we’re getting technical.

What’s it for?”

This is occasionally the follow-up to the pills questions; if you want to be a jerk, you can say something goofy like “penile hyperplasia”, but I usually say something generic like “reflux”. The trick to this lie is to find something sufficiently close to your actual symptoms, that people will assume that they know what’s wrong with you. You want to land them in the general neighborhood of your actual problem, without being specific enough to lead to more questions. It’s not so much a flat-out lie, as just enough truth to be satisfying, but not enough to be helpful. This directly leads into the next lie, and it’s kind of a big one.

“What’s wrong with you?”

As far as people who ask nosy questions should be concerned, there are only two kinds of illness: “allergies” and “cancer”. Again, you may wish to be more open with your illness, but these two are all you really need (apart from clinical contexts, obviously).

If you have an autoimmune disease, you’re basically allergic to yourself. Granted, that may not be strictly true from a medical perspective, but it is true enough from a non-technical perspective. The reason I don’t drink is because I’m “allergic” to alcohol — at least as far most people know — not because I have IBD that ruined my small bowel and colon and alcohol gives me massive diarrhea. See how much happier everyone is with “allergies”?

And if “allergies” aren’t enough, there’s always “cancer”. I poop into an appliance because I lost my rectum to IBD. When a less-than-close friend asks me about the appliance, I’ll tell them it was “cancer”. Why? First, I was in fact diagnosed with cancer (wrongly, it turned out) in the process that lead to my surgery.

Second, there are in fact a ton of similarities between my disease and cancer, even if the clinical details are somewhat different. The difference between IBD and colon cancer is way smaller than the difference between brain cancer and colon cancer, in practical terms. In fact, nearly every part of the body has a conveniently lie-able cancer. Again, “cancer” is just enough truth to be satisfying, but not enough to be helpful.

What makes “cancer” a really useful lie is that most people assume they know what it means. We have movies and TV shows and comedy tapes about cancer: it has a well-established story line. People don’t feel the need to ask after “cancer”, because they feel they already get it.

By contrast, one of the things I have learned about IBD is that most people don’t understand it. I can explain at length, and it still doesn’t make sense to them. So they assume it’s fake, or that I am exaggerating, or that it’s mental somehow. And they treat me like a weirdo. That really, really sucks.

But say “cancer”, and suddenly I’m one of those yellow-bracelet hero types, and they are suddenly decent human beings. “Cancer” ends up being a shorthand for a kind of ‘just deserts‘ mental calculus, in which they feel obliged to grant me a standard dose of compassion. They feel like they understand, and I feel like they care, and everybody is reasonably content.

Which is to say, I am doing them a huge favor by lying to them, because the actual literal truth would lead them to behave like ignorant jerks. Nobody wants to be an ignorant jerk, right? Using “cancer” gets them to the right place — where they should be on the map of human decency — albeit by an arguably shady shortcut. Whatever, right? If I had the energy for the long way around, I wouldn’t be sick enough for it to matter.

So: you’re going to lie about your illness, somehow or sometimes. The trick is to do it deliberately and purposefully, rather than casually and pathologically. Feed the nosy ones enough truth to feel full, but not so much that they vomit. Instead of outright lies, you’ll find a lot of easy half-truths about your illness, if you allow yourself that ‘certain point of view’.




How sick am I?

18 March »

Ever wondered how sick you are? Tally up your annual health care expenditure, then check out this awesome graph from the National Institute for Health Care Management Foundation’s report, The Concentration of Health Care Spending:

Mean per-capita spending by group

The trick is that the graph breaks down into percentile brackets, but then reports the mean spending within that bracket. So, for example, in the top 30%, the mean (or ‘average’) spending is $12,265, but because the curve is tilted steeply upward, the person at 71% is paying a lot less than the person at 99%.

In fact, the way the data are presented makes it hard to infer brackets for each percentile range.  I spent a fruitless afternoon trying to spreadsheet up the right numbers, before deciding it’s beyond my limited calculus skills.

So then, guesstimation leads me to believe I am definitely in the top 10%, possibly in the top 5%. I don’t put down $26k a year in medical expenses, but again, that’s the mean for that bracket. Figure the bottom end of the 10% bracket is somewhere around $15k, which is easy enough in a good year for me.

In the top 5%, the mean is $40,682. I easily cleared $40k in 2012, thanks to a pricey surgery. Again, that’s the mean, so the bottom of the bracket is probably closer to $30k. I probably beat that every year from 2004 to 2006, due to my being extremely sick and on a number of different meds.

So I am probably in the sickest 10% of Americans, as judged by health care spending — which, granted, probably includes weird stuff like boob jobs, so maybe it isn’t the best measure. And that’s in a good year. In a bad year, I am in the 5% sickest Americans.

Not that it’s a competition — it’s not — but I this exercise gives us some useful perspective: a person can be pretty sick — in dollar terms — and still lead a  meaningful life. You might think those top 10% are bed-ridden, hospitalized, waiting to die; you might think we’re wasting money on them, keeping them alive for nothing. And you’d be wrong.

I know because I’m one of them.

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Dallas Buyers Club

10 March »

I watched Dallas Buyers Club last week, and enjoyed it — a nice counterpoint to Breaking Bad. In Breaking Bad, illness turns the man character bad. In Dallas Buyers Club, illness turns the main character… well, maybe not good, but better.

In that respect, Dallas Buyers Club offers a very conventional approach to illness. It is a comfortable story, almost trope-ish in its approach to disease. Three things save it from being pabulum. First, obviously, Matthew McConaughey is a fantastic actor. He gets made fun of a lot, but listen to his interview with Terry Gross on Fresh Air, especially when he starts talking about ‘oil of mink’ (around 29:45). It is utterly hypnotic — and hilarious.

Second, also obviously, is AIDS. If this movie were about a white racist who came down with sickle cell anemia, it would seem trite. AIDS and queer characters are still raw enough to be compelling melodrama, I guess. Third — much less obviously — is the FDA, specifically their role as the villain. If not for the tension between the FDA and AIDS patients, the story would seem flaccid.

The problem for Dallas Buyers Club is that it tries to paint the FDA as a heartless, corrupt bureaucracy — which it kinda is — but it’s a heartless, corrupt bureaucracy that most people think we need. We all want somebody to make sure our drugs are safe and effective.

Dallas Buyers Club shows the agency not working, but does not explain why it doesn’t work nor how it should work. You leave the theater thinking, “well, the FDA killed that guy” — which is fine, but the film doesn’t explain how he was supposed to live. And despite villifying AZT throughout, the film finally admits that AZT was one of the first effective meds for AIDS. Ron Woodroof didn’t take AZT: he died. Thirty years after he got sick, AZT is still used to treat AIDS patients. Why? Because the FDA process worked, at least at some level.  Could it have worked better? Sure, possibly.

In the meantime, it’s just not realistic to think that any person should be allowed to take any medicine they want, without the FDA being involved somehow. Lest you think this is abstract, right now there are two medicines for IBD that the FDA has not approved, one of which I think probably works and one of which I know works. I can’t take them, and that sucks, but I still don’t think FDA regulation is a bad idea. And frankly, what that means and how to resolve it are way more interesting to me than Jared Leto in drag.

Dallas Buyers Club was a good film — obviously — but the simplistic portrayal of the FDA makes it less effective than it could have been. There was a deeply interesting dilemma there, that would have stood up to some serious scrutiny — but the filmmakers phoned it in.


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Breaking Bad In Britain

8 March »

This Christopher Keelty comic about Breaking Bad is going around: it’s cute, but it’s bullshit. If you think Breaking Bad is about the cost of chemo, you’ve missed the point. keeltyI saw the ‘toon on Facebook, where it was shared by someone who got it from Occupy London, with the caption, “What Breaking Bad would look like in the UK.” I normally don’t object to any criticism of the US healthcare system, but it just so happens that I started watching Breaking Bad, and finished the first season earlier this week, and Facebook is wrong.

If you still haven’t seen it, the story starts with a mild-mannered chemistry teacher getting a diagnosis of terminal lung cancer — note: terminal. He has health insurance, but it’s not great. Later in the season, a former business partner offers to pay for his treatment, and he declines. When his family tries to convince him to get the treatment, he explains that he does not want to wither away, does not want to live out his last days debilitated by chemo and radiation therapy. His insurance, his partner’s offer, the U.S. healthcare system are all irrelevant at this point, because he wants to die.

But he has already started cooking meth. It went badly, he got scared away from it, but he’s already done a batch — and not to pay for cancer treatments he doesn’t want. Why?

Healthy people have this idea that if you work hard, keep your head down, and play by the rules, everything will work out. When Walter White gets his diagnosis, that is exactly the kind of person he is. His diagnosis changes that — it challenges that assumption, explodes it. When Breaking Bad started (in 2008), Walter’s diagnosis was not even a legally protected disability. He realizes he cannot guarantee any security for his family, even working two jobs. Walter realizes that if he plays by the rules, he is going to lose — that his family is going to lose.

After his family intervenes, Walter decides to get the treatment. But there is a scene in between, in which Walter wakes up and looks at the titles of the books his wife has on her nightstand. One of them is about cancer, but the rest are about babies: Skylar White is pregnant with their daughter. Walter tells Skylar he will get the treatment, but it’s not because he wants to live. It’s because he wants to provide for his family. It’s because he wants to make money. And the best way for him to make money is cooking meth.

Walter White gets chemo so he can cook meth — not vice versa.

If you watch the show thinking he’s only cooking meth to pay his medical bills, you’re missing the point. Later, when Walter is calculating how much meth he needs to sell, his math presumes that he will die in the very near future. That is why he forces Tuco to accept 4.5 pounds of the stuff; he does not believe he has time to make the money he needs at a pound a week.

And it’s not just the money: Walter enjoys cooking meth. He enjoys the illegality of it, the risk, the adrenalin. He believes that any consequences he faces are minimal (dying in prison isn’t that different from dying in a hospital), and the excitement makes his life worthwhile, invigorating, interesting. He is a brilliant chemist, stuck in a thankless job, just scraping by — it’s following the rules that got him here, and he got a raw deal. Cancer changes the deal, lands a crushing blow to his faith in the rules, launching him into exhilirating anomie. This is the point of the sex scene in the school parking lot: it’s better because it’s illegal.

Walter White is absolutely right. The rules suck if you are sick. The way our society is organized makes it nearly impossible to live a full life with a serious illness. That’s true in the U.S., but it’s also true in lots of countries with functioning health care systems. More to the point, nothing about the U.K. system or anywhere else would change Walter’s diagnosis, or his prognosis. It is still possible to head a struggling family working shit jobs and barely getting by, and die of terminal lung cancer — even with universal health care.

None of this is to say that health reform won’t help a lot of people in the US. But health reform isn’t the point of Breaking Bad. You could argue, with good reason, that a full range of reforms would making the Breaking Bad scenario irrelevant — health reform, more facilities for people with disabilities, better child care, paying teachers more, a general reduction in income inequality. We could imagine a society in which the central tension in Breaking Bad does not exist, but I doubt that society exists anywhere on Earth.

Breaking Bad isn’t about health care reform. It’s about the gossamer tissue of obedience that makes our society function, the illusion of social contract that keeps people playing by the rules. In Walter White’s case it is the prospect of illness which shreds that tissue, turning him lawless and dangerous — ie, bad. Yes, we should be taking better care of sick people, but that is only the beginning of what Walter’s illness is meant to tell us about society.











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Nexus: a review and a response

28 February »

I recently finished Ramez Naam’s Nexus, a novel about the potential for technology to enhance and/or fundamentally alter humankind in the near future.  It’s an exciting read — more of a thriller than a science fiction novel — with well-drawn characters, tight action sequences, and very plausible world-building. At heart of the story is an  dilemma: what are you willing to risk to be better — to be smarter, faster, stronger, to live longer and to see, hear, know, and do more?

The main character, Kade, is a graduate student developing a programmable nanoelectronic interface for the brain. It’s like a computer upgrade to your nervous system, allowing users all sorts of capabilities beyond the normal human operating system. It also allows human brains to network with one another, which makes it also a kind of drug. The drug/system is called Nexus 5 — nod to P.K. Dick, one assumes — and is illegal. Kade is arrested, and then pressed into government service as an informant/agent to track down various Nexus users and dealers.

This is all very interesting and exciting, but Naam presents the story with the presumption that readers will be on the fence — that folks will have some serious reservations about technology that lets us become ‘transhuman’ (his word). I’m sure that’s fine for most readers.

Not for me. Would I take Nexus? You bet. In a heartbeat. There was no dilemma for me, from page one, because I already knew I was rooting for better, stronger, faster, smarter. This is not to down-play the very real social, ethical, and political problems these technologies might pose — but just to say that I, personally, would be better off with the tech, and I am not prepared to deny the same possibility to anyone else.

I come to that perspective honestly, of course. The thing about being sick, about having surgery upon surgery, about taking dozens and dozens of drugs, about having a bionic rectum, is that it transformed my understanding of humanness. I find the baseline overrated. Normal is no longer enough, which is why I find controversies like steroids in baseball or Lance Armstrong’s doping to be pointless and exasperating. I am not really that interested in what humans can do, but I am fascinated by what we might become — how we might transcend the limitations that biology has placed on us. I don’t believe our DNA is sacred and I don’t think it’s cheating to give nature a helping hand.

I mean, I’ve already endured mind-boggling amounts of technology just to be a barely functional human: why shouldn’t I be allowed to do what I can to be better than that? If I was eligible for LASIK, I’d do it. If I could convince a doctor to give me steroids or HGH, I would. If I could take Nexus 5, I definitely would.

So throughout the novel, the basic tension that Naam assumes readers will have just isn’t there for me. And it’s still an excellent novel — definitely worth checking out. It’s exciting to see an expert looking into the near future and saying, ‘This might be possible’. Because that would be an awesome future to live in, if I can wait that long.

But it’s alarming that he also sees the potential for such broad resistance to that possible future. His vision of a US government dead set against technologies like Nexus is worrying and chilling, but all to familiar to anyone who follows the DEA crackdown on pain medicine or other useful, illegal drugs. The difference between me on a bad day and me on Vicodin is almost enough improvement to be science fiction, and yet there are plenty of people opposed to my use of that medicine.

Nexus is worth the read just for Naam’s prognostication of a possible future. If he is right, it could be an amazing world to live in — especially if you have a chance to become one of those possible humans. I want to see the sorts of possibilities he imagines — I did from page one, and more so having finished the book.