This is the new video for The Mynabirds single, “Semantics”. I am really looking forward to this album – I plan to preorder it on vinyl.
A couple years ago, I realized that maybe 80% of my music collection was by men. And suddenly it was very weird that I was listening to a bunch of dudes singing things like, “I need you baby, ooh-oh…” Once that thought had formed, I couldn’t shake it.
So I began a project to add more women to my music collection – especially artists currently recording and performing. I have an eMusic account: my rule is that half of my monthly credit has to be spent on women (or at least woman-fronted groups).
Probably my favorite group so far – definitely top three – is The Mynabirds, lead by powerhouse Laura Burhenn. She did vocals for the Postal Service, which I was not a huge fan of, but her solo/Mynabirds work is outstanding. It’s fun and soulful and edgy and smart – it sounds like a little like top 40, but it’s much deeper and more complex.
This song, “Generals” – from their second album of the same name – got me hooked:
Their first album, “What Lose In The Fire We Gain In The Flood”, was also very strong. Here is “Let The Record Go”:
I assume The Mynabirds will tour behind the album in the fall, and I really hope they come to the DC area. I would love to see them.
If you live in the DC area, they are opening for the Pixies at the 9:30 Club this Sunday, which should be a great show – I’m deeply bummed that I can’t go.
If you haven’t heard The Mynabirds before, check them out. And if you have suggestions for women I should listen to, let me know.
My loyal reader(s) might have noticed some changes lately, in particular a new photo. In fact, some have asked: “Is that really you?” The answer is yes, but that raises another question: why?
When I started this blog, I was in a grad school program. The professors and administrators gave me a really hard time for my illness – as in, weren’t helpful at all, held it against me, etc. And when I decided I wanted to blog, I knew they would punish me if I used my real name. So I adopted a semiblogonym.
About two years ago, I dropped out of that program. No degree, no nothing – just a ton of books nobody wants, a ton of student loan debt I don’t want, and an electric guitar I call “The Doctorate” that I bought with part of my tuition refund. Even though it was the right decision, dropping out launched me into a major depression, and it took me a couple years to get back on my feet.
My loyal reader(s) will also know that I have a policy of not blogging about family, except that I sometimes mention them using elliptical phrases. So when I write something like, ‘My Primary Beneficiary decided to add a dependent to her policy,’ I trust readers will correctly infer my role in that process.
Along with that decision, it was also decided that I should probably have a full-time job, instead of the piece-meal and part-time work that I had been doing. Many jobs in my field require the kind of background check that does not look favorably on semiblogonymous online personae, so I started planning to shut down the blog and my Facebook account. Some of those jobs were with the government: if I didn’t have depression before, USAJOBS made damn sure I got some. I sent out resumes and cover letters, and heard… nothing.
Meanwhile, although some women like to make ‘birth plans’, it turns out that in most hospitals there is a place called the ‘antepartum’ ward, which is where women go if their birth plan is not happening. They just kind of stay there until something else happens. Some women have doctors who pronounce it ‘anti-partum’, which is alarming until you figure out what they really mean. Some women are also lucky enough to have unemployable spouses who can help take care of them in the antepartum ward for weeks on end, even though that spouse has a real phobia about hospitals.
(Given that it’s my strict policy not to blog about my family, you’ll understand if I never, ever post a picture of any child possibly biologically related to me. But just hypothetically speaking, if I did spend a lot of time in the hospital waiting for somebody’s baby to show up, and just hypothetically that baby spent a short while in the NICU, then you could probably expect that baby to have looked at some point very much like the one in the photo linked behind the break at the end of this post.)
So after a couple months of all that purely hypothetical drama, I realized my job search was completely off the rails, and that I am now a stay-at-home-parent-or-guardian. On the one hand, this was bad news vis my student loan payments. On the other hand, it was good news for my money-losing blog, in that I can be more open about who I am — though not 100% transparent, because I still have to insulate some folks from my bullshit. I can at least post a real picture of myself.
And then I saw a job vacancy for a blogging gig, where I would get paid to blog about research for IBD. More on that soon, but the short version is that I got the job. Part of that was putting out more posts in the last month or two, to show that I can actually produce content — so that’s why the uptick in activity here. The job is very part-time, and pays me less than half what my student loan payments cost per month, but it is paid work and should be fun. Point being: most of my IBD related blogging will now happen on that site, and this one will be used for more general blogging.
I also decided I really wanted to self-publish League of Mortals, after a year or so of rejection from agents and publishers. If you are one of the dozen or so who have bought copies, thank you so very very much. And also, I apologize for the typos, because it turns out that I only thought about doing the final proofread, but did not. I am working on a better draft, so email me if you want a replacement copy. And since the promotion of that book is now my sole responsibility, I now have to step up my game online. (You’ll notice my posts now all have little ads for the book at the very bottom.) That means more activity here and in social media.
Anyway, that’s what’s going on around here, and why all the changes. Thanks for keeping up with me, and I’m glad I can be a bit more open with you going forward.
My parents were cleaning out and found one of my earlier masterworks: “Famous Black Americans”, which betrays some alarming ideas I seem to have had about famous – and all, for that matter – black Americans. I think I was in first or second grade when I did this, just because my sketching skills were pretty solid by the end of elementary school.
This is the front cover and the title page; I’ve blurred out my first name, for deniability purposes. You’ll see why this matters in a minute. You probably also can’t read the text in the cover portrait, but that’s supposed to be Booker T. Washington. I’m pretty sure my teacher drew the face, and I just colored it in, but the rest of the artwork is mine alone.
So here are… Famous Black Americans:
James Weldon Johnson
I have no idea who James Weldon Johnson is, or why he was chosen to headline this book. I had to look him up on Wikipedia. Famous? Probably not. Distinguished? Most certainly. Deserves to be more widely known that he is? Definitely. But famous…?
Booker T. Washington
Our next Famous Black American is also the cover model for this pamphlet. You can see the difference in my interpretation.
George Washington Carver
Carver was a indeed famous black American. His contributions to agriculture are widely and rightly hailed. Less famous is that that he had a penchant for frilly sun dresses. He looks like quite the high-stepping jazz swinger in this fancy yellow frock.
Dr. Martin Luther King, Jr.
Dr. Martin Luther King, Jr., was indeed a man of peace, but I ask you: does this portrait look like a ‘man of peace’? More likely it looks like what you get if Don King banged Godzilla. Probably this is also exactly what Bull Connor and George Wallace saw every time they tried to picture what Dr. King looked like: the disheveled hair, the wagging tongue, robust lower lip, the pointy teeth, the maniacal leer. If you are imagining this guy trying to integrate your daughters’ schools, fire hoses seem like a good idea.
I’d like to take a moment to apologize to Dr. King, his heirs, the Civil Rights movement, all black people – famous or not – the Crayola crayon company, the students and teachers of Astoria-Park Elementary, and all American people for this drawing. On the other hand, my teacher let me take it home to my parents with no comments.
At the time, Michael Jackson was probably the most famous black American. I remember a D.A.R.E. assembly at this same school, where the local sheriff brought in a robot that looked suspiciously like a Dallek from Dr. Who. The robot, which was probably just a fancy remote controlled car, danced on stage to ‘Beat It’, and this was somehow supposed to keep us from taking drugs. In elementary school. I’m not sure why Michael Jackson looks like an Afghan mujahideen in this portrait, but at the time my parents were letting me watch more 60 Minutes than MTV. Also, I don’t know what to make of the ewok-like figure at the bottom.
Before 1994, these were all the important facts about O.J. Simpson. This would have been an apt and solid summary of his accomplishments. I think I probably ran out of time on this drawing, since O.J. is the only FBA not colored in.
My drawing of the Heisman is wrong, too – I now realize. Oh well.
League of Mortals, my fantastically dark and funny novel about illness, is finally a thing you can buy for real money. I published it at Smashwords, an eBook only retailer: you can buy it in .mobi for Kindle, .epub for most everything else, and a few other formats. See below for some version notes….
League of Mortals is the book I wish I had when I got sick. When I sat down to write it, that was my process: what would have helped me through the dark and lonely years after my diagnosis? I wanted it to be honest, ferocious, free of inspiration porn bullshit, and funny. I think I succeeded. In fact, I know I succeeded. It’s not for everybody, but for some people it will be perfect. You’ve never read a book like this.
I spent about a year trying to publish the ‘traditional’ way – sending out queries, waiting forever, feeling extremely depressed, giving up. It got to the point where I would welcome a rejection letter, just to know that somebody had seen my query. Most agents and publishers never sent anything back. In the meantime, a few of my author friends suggested self-publishing. Much as I long for the satisfaction of seeing my name on the racks at the local bookstore, at this point I just want it out there. Besides, lots of famous authors self published books — James Joyce’s Ulysses, Charles Dickens’s A Christmas Carol, Ma, E.L. James’s Fifty Shades of Grey, plus lots of other books I have also not read.
The way Smashwords works, and the reason that this is a soft launch, is that right now you have to buy the book through their website. If you have a Kindle, Nook, Sony Reader, iPad, or whatever — they probably have a version that you can read on your device. In a week or two, Smashwords will start pushing the book to their affiliates, including the iTunes store, B&N, etc. They won’t send it to Amazon until I’ve sold 2000 copies, which is unlikely.
On Smashwords at this point: the Kindle version (.mobi) is beautiful – I’m really pleased with how it turned out. The .epub, which most other readers use, is not perfect — there are a couple random page breaks, because apparently epub thinks books should be a hundred pages long at most. The other versions are pretty good, too, but the layout on the PDF is a casualty of the Smashwords’ output process: if you want a better PDF, email me proof of purchase and I will custom format one for you.
Also: Smashwords asks you to label things ‘adult content’ if it contains material that is inappropriate for young people. I think that’s probably true for say, a 14-year-old, but a mature 16-year-old could handle the book. It has lots of gross stuff, and some violent stuff, and some really sad stuff. Anyway, Smashwords’ cut-off is 18, which seems high, but I went ahead and pegged it as ‘adult content’ to keep from getting in trouble. If you are under 18 and can’t buy a copy, let me know and we’ll work something out.
One last note, on price: I think it’s fair. I tried to make it reasonably cheap, but it also represents a lot of work for me, and a lot of ‘research'(=suffering) that made the story possible. Also, I am at a point in my life where I could really, really use the money. For reference purposes, I’ve spent about $200 a year of my own money maintaining this blog, for going on 7 years now. If I recoup half that, this project will feel like a success. Maybe I’m being too neurotic about asking people for money, but I honestly think this is an exceptional piece of work for the price.
Anyway, I hope you read it, and I hope you enjoy it. But most of all, I hope it helps.
The story about Matthew Kohr, the Raleigh police officer suing Starbucks for burns he received from a free cup of coffee, is blowing up in the IBD community online. Kohr claims the burns triggered a flare of his latent Crohn’s that led to surgery, so you might think people with IBD would be at least cooly sympathetic.
You’d be wrong. People are angry at this guy, and some of the threads are as heated as I’ve seen. Honestly, it’s a little bit nuts, and I’m tired of seeing people lose their minds at this guy. Here’s why…
First of all, I don’t know most of the facts. I only know what the media reports, and the stories are clearly set up to make the coffee cop look ridiculous. IBD is still a punchline in popular culture; I can’t imagine why anybody thinks this case is getting reported fairly. I don’t know what he went through or why he decided to sue. I can only guess. I’d like to read his complaint or a transcript of his trial, but until that becomes available it really is the court’s job to decide whether his claim has any merit.
Second, the fact that the coffee was free matters not at all. If the coffee was filled with broken glass, or poison, would it matter whether it was free? No: Starbucks would still be liable. To make an analogy: if you have good insurance, you might get 100% coverage for hospital costs (in-network). In effect, the hospital care is free to you. Now say a doctor in that hospital injures you: is the hospital not responsible because you did not pay anything? No way: free or not, Starbucks has an obligation not to injure its consumers.
Third, I would be dollars to donuts – say $750,000 – that some beancounter at Starbucks decided to pick flimsy cups in order to save a few bucks. I mean, jeezy pete: they have to give you another slightly larger cup to go around the first cup, just so you can hold your coffee safely. So not only does this make the cups more likely to collapse, as the coffee cop alleges, but they also don’t insulate well. That means the coffee has to be heated to dangerous temperatures to stay warm longer. This is more or less how McDonald’s got into trouble in the Liebeck case. If Duracell sold batteries that were cased in tissue instead of metal, they would get sued for burning the crap out of people, too.
Fourth, there seems to be a basic ignorance of medical science. What do burns and inflammation have in common? Hint: in”flame”ation. A burn releases inflammatory molecules not only at the site of the burn, but also throughout the body. The easiest way to spark systemic inflammation in a person is to set them on fire. How is it that the same communities full of people telling each other not to eat gluten or sugar or soy because they cause inflammation somehow don’t know that burns also cause inflammation? It is entirely probable that his injury launched a systemic cascade that put his IBD out of control. Is that Starbucks’ fault? I’d like to see a court decide.
Fifth, there seems to be some kind of social norm here that everyone wants to enforce, with respect to frivolous lawsuits. Lawsuits are how we solve our differences in this country. For people who have been injured, it is often the only way they can take care of themselves afterwards. Granted, the system is grossly unfair and dysfunctional, but there is literally no alternative. It is the only game in town, and the idea that a person is bad or wrong for playing is perverse. If the coffee cop has significant medical bills or debt from this episode, suing Starbucks is the only way he can get whole, and we should respect his decision even though we may disagree.
Sixth, even if he’s just making a play for the money, so what? IBD sucks, and the rules in this society make it really hard for people with severe illness to break even, much less get ahead. I can easily see how a guy could spend his career with his nose to the grindstone, keeping quiet about his disease, working his ass off — only to see it undone by a cup of coffee — and think, “F— this, I’m getting mine.” Bajillions of people thought Walter White was teh awesome for making exactly that decision in Breaking Bad. Granted the coffee cop is not doing something as socially useful as cooking meth, but to the extent that he is using a system that otherwise would grind him up and spit him out to make himself secure, I’m not terribly bothered by that. You can’t underestimate the size of the tiny little shits most people give about those of us with IBD. If this society was at all interested in our wellbeing, healthcare would be free, cannabis would be legal, opioids would be OTC, and every worker in the country would get two weeks of paid sick leave. But they don’t, so it ain’t. The idea that the coffee cop owes some sort of loyalty, that he’s obliged to color in the lines, that he has to follow the rules that are so clearly opposed to our wellbeing is a bit rich for my blood.
Seventh, a lot of people with IBD seem to take this case super personally. Ignoring everything above, let’s assume: this cop is a huge jerk. So what? That means absolutely nothing to anyone with IBD. This guy’s behavior reflects absolutely nil on me, any more than a random black person should feel bad that OJ Simpson killed two people. The only reason why a person might feel that way is that some people – whom we can safely call ‘bigots’ – might point to OJ and say, ‘they ain’t none of ’em any good’. As bad a guy as OJ might be, it’s not his fault that some people are bigots. If people point to coffee cop and say that about us, they’re bigots, too; why should we blame coffee cop for our bigots? Maybe what coffee cop is doing is wrong, but his behavior says absolutely zero about anyone else who happens to share his diagnosis.
If the case had no merit, the judge would have thrown it out. You can bet Starbucks filed a mountain of paperwork begging the court to do just that. Yet here we are.
Folks with serious illness often look to other patients for support, but sometimes that support is not as, um, support-ful as it could be. Here are ten things I see and hear all the time, that I wish patients would stop telling each other.
1. “Have you tried…?”: I know folks are trying to help, but I would much rather see this rephrased as: “I have tried…, and it really helped me.” Too many times people throw out ideas for stuff they don’t actually use themselves. Random free association is not the same as thoughtful advice.
2. “That stuff is bad for you.”: Maybe it is, maybe it isn’t. Especially for people with gut diseases, the list of things they can tolerate varies widely from person to person. I have friends who can drink themselves senseless with no problem, where I get diarrhea from liquid Immodium because of the alcohol. Again, rephrasing: “I can’t have that, it is bad for me….” All the difference in the world.
3. “Western medicine just makes you sicker.”: Yes, Western medicine (or simply: medicine) has some problems that need to be fixed. But it’s just not often the case that regular medicine is worse than no medicine at all. Blaming people for taking their medicine is a pretty cruel thing to do, in my view.
4. “Do what your doctor says.” The opposite end of the spectrum from #3 are the folks who recommend blind obedience to physicians. My doctor is there to help me, not live my life for me, and I need to be an active participant in my care. Sometimes that means saying no to things that don’t work for me (e.g. prednisone).
5. “Pain meds just treat the symptoms, not the disease.”: To be fair, I hear this mostly from physicians, but also parroted by patients every now and then. It’s okay to treat symptoms. Tylenol doesn’t cure the flu, but I still take it every time I run a fever. Sudafed doesn’t cure my allergies, but I still take it when I get congested. Pain is a very important symptom, and it’s okay to treat it.
6. “You need to focus on your health.” This is such a bad idea, in my experience: I didn’t start to really live my life until I quit focusing so much on my health. There’s this whole empty space in my 20s, where all I did was focus on my health. Patients should be able to live their lives; health should help them live those lives, not take over those lives.
7. “What doesn’t kill you makes you stronger.” I offer this one as a former NCAA athlete, who wanted it to be true for a long time. It isn’t. I am a worse person for my illness in many, many ways. Some people can rise above serious illness or injury, but we shouldn’t expect all patients to be heroes — or else the heroes wouldn’t matter.
8. “There’s folks who have it worse.” This one is tricky for me, because when I was first diagnosed I had a friend who was seriously ill. He was much sicker than me, and that fact did help keep me from feeling too sorry for myself. But that was because he was a real person in my life and a good friend who helped me. The abstract fact that other people are suffering more should not make me feel any better about my life, unless I’m some kind of monster.
9. “Hang in there!” This may have meant something once upon a time, but it is now weak tea. It is literally the least amount of response a person can give to a person in need. We can do better.
10. “You should be more positive!” Illness is a dark place — Sontag’s ‘night side of life’ — and accepting and acknowledging that is an important step in healing for most people. If we only talk and listen to other patients who are positive, we’re excluding lots of people who are down, depressed, or otherwise struggling. We should accept what baggage other patients bring to the conversation, and not try to filter out things that make us scared or uncomfortable. The ‘be positive’ attitude also unfairly stigmatizes those of us who are being treated for depression or similar problems. Dealing with illness honestly means being able to see the good and the bad, and keep going.
Along those lines — and just to be more positive — here’s the one thing I wish patients would say to each other more often:
“I hear you. If you need to talk, I am here for you.”
I think at a certain point every person with a chronic illness gets to where they would rather just be sick than listen to advice from people who know only one tiny thing about their disease.
If I tell people I have Crohn’s, there’s a 3 in 5 chance the next thing out of their gobholes will be some version of, “Oh, my [distant non-blood relative] has that; have you tried [some random non-FDA approved thing] that really helped him [when I last talked to him about his disease in 1997]?” My new response to this is to say, “Here’s my phone: call him right now, and if you’re wrong or can’t reach him I am going to grill and eat your pets.”
But this post isn’t about those people. This is about the people who should know better: my fellow sufferers, the rest of Dr. Crohn’s bastard children. These are people I want advice from, because they know what they’re talking about (usually). The problem is that their advice is often badly done, so it ends up being not helpful.
When I want advice, I am looking for one of two things:
1. Information from a double-blind placebo-controlled peer-reviewed study.*
2. Information about other patients’ direct personal experience.
Anything else is, sorry to say, bullshit.
I don’t want links to content mills. I don’t want links to press releases. I don’t want links to other people’s blogs (since I probably already read that blog anyway). I don’t want second-hand information about something a doctor said might work. I don’t want a recap of something someone read about six months ago in the same forum.
So, for example, if I post about joint pain, it’s not enough – not by a long shot – to post, “Try acupuncture!!” What I need for that to be useful is a) an unambiguous statement that you yourself have tried acupuncture, b) that it worked, c) that you continue to use it, or have a good reason not to. Example:
You should try acupuncture – it totally works!
I know how much joint pain sucks. I’ve been getting acupuncture for two years, and it really helps!
Or if I post about my insomnia,
Don’t use sleep meds – they only make it worse!!!
I tried Ambien, but it made me groggy all the time – it was as bad as being sleep deprived. I find earplugs help me sleep better.
It’s also often helpful to see time spent on a given therapy, because IBD has a tendency to remiss for no reason at all. A person might start a drug or a supplement that seems to work, only to flare weeks later – but they never come back to admit that it didn’t work after all. It also helps to see what else a person is taking at the same time, just to make sure something else isn’t doing all the work.
I take fish oil capsules… I am in remission!
I have been taking fish oil capsules for two years, along with my other maintenance meds (Asacol, Imuran). The fish oil seems to help reduce cramping.
I am not writing this to scold my fellow sufferers. It’s just that when I do want advice, I want it to be good advice. when I need help, I want it to be helpful. And a lot of times, I see what could be good advice, badly packaged. Taking a few moments to flesh out details can turn that bad advice into something truly helpful. In return, I will promise not to eat your pets.
(*Yes, there are problems with medical research, and they disturb and alarm me, but that is a different conversation. More to the point, the problems in medical science in no way justify the wild speculation and irrelevant information that passes for advice on many social media sites.)
I’ve spent the last several weeks/months helping a loved one hack through the healthcare jungle, a process that involved us talking to many, many doctors. It all worked out in the end, but for a long while it was super frustrating and scary.
One thing that we learned along the way was that doctors vary widely in how they deliver bad news. One doctor could tell us “x may be a problem” and we would nearly die from fright, where another would say “x may be a problem” and we would hardly blink. It was all in the tone and body language, I guess.
I started asking the doctors, “On a scale of 1 to 10, how much should we worry?” Stuff that we would have guessed was a 7, doctors would say, “Oh, no, that’s a 2.” But, of course, some doctors needed me to set parameters: what’s a 1? What’s a 10?
Eventually, I started saying, “On a scale of 1 to 10, where 1 is The Dude from The Big Lebowski, and 10 is the Nazis’ faces melting off at the end of Raiders of the Lost Ark….” So that’s what’s going on here. Granted, the scale only runs from 0 to 8 – I wasn’t counting carefully when I drew the faces. And, obviously, Alfred E. Newman is a more obvious 0 point than the Dude, but the Dude is what came to mind originally.
Print out a copy and take it to your next doctor’s appointment.
If you are visiting from Crohnology, welcome! I hope you like what you see. (Also true for any other readers.)
I’ve gone through my archives and pulled out a few links that show my work with respect to research and related news. In no particular order:
23&Me & Me & IBD : I look into the 23&Me IBD study and conclude that it is mostly a market research project, but it can’t hurt to participate. I did.
The OHIE Bottom Line : An important study is widely believed to show that health insurance doesn’t make people healthier. The only problem is that the study only checked for heart disease and diabetes, and many commentators do not pay attention to what the patients themselves felt about their health.
Avoid Stress, Avoid Life : Some of the most widely misunderstood research in the IBD community holds that stress makes our diseases worse. But two major studies showed that is not the case. More to the point, if stress made IBD worse, then high doses of prednisone would also make it worse: because pred is an analog for human stress hormones. I urge folks with IBD to not avoid life, just because they think they have to avoid stress.
The Kids Are Alright (+/-10%) : I sneaked into a medical library and downloaded a bunch of articles on IBD genetics to show how the disease is heritable and what the risks are for people with IBD thinking about having children. I was so happy with the results, I decided to have a kid.
Boring Econometrics Post : I point out that an article being used to describe how patients make bad decisions about their care misses a key methodological step, and ignores the more immediate problem that patients often get bad information for these sorts of decision.
Kiss Your Worms Goodbye : I discuss the disappointing results of the Coronado Biosciences helminth trials, which didn’t last long enough to be good IBD science.
Can’t Be Satisfied : I point out that a study on how happy people are with their ostomies – a paper sometimes used to show how sick people are irrational – ignores the importance of patients’ sense of hope for a better life.
Hope this helps. Email me if you have any questions.
I’m still on a hiatus from blogging – although I broke the lull a couple times for things that needed saying. Otherwise, I’m still too busy to keep it going. If you’re a regular reader (hello? hello? helloooo?), I apologize.
Just to be candid, I’m having a bit of a crisis in terms of purpose and direction. I’m not sure I’ll ever have enough time to blog regularly. Part of what I am doing is trying to figure out my next steps: whether I want to put a lot more energy and effort into my blog, or not. I’m leaning pretty heavily towards ‘or not’.