I Hurt So Hard It Laughed: More or less the best of Duncan Cross, 2008 - 2015

By Duncan Cross

In seven years of blogging, Duncan Cross's posts ranged far and wide across the healthcare landscape. The essays in I Hurt So Hard It Laughed range from the symptoms and side effects of his illness, to the social and romantic challenges of hiding a disease, to the politics and advocacy of disability. Cross is raw and real throughout, showing an unvarnished glimpse of life with chronic illness.

In his personal essays - about his life and experiences - Cross is frank and honest, showing himself as a creature and casualty of modern medicine. Readers learn not just what it's like to have a disease, but what it means to have an illness - to live day-to-day with pain and sickness and looming mortality. Far from being sappy or sad, Cross's essays share his determination to make his life meaningful, on his own terms.

In his political essays, Cross takes on the problem of healthcare reform, arguing that our system must do a better job of taking care of sick people, especially those with chronic illness. Against the half-truths and exaggerations in that debate, Cross shows what it means to be sick, to need healthcare yet be trapped in the dysfunction of the American system.

In defending the lives and rights of the chronically ill, Cross gives no quarter and suffers no fools. Wielding an allergy to bullsh-- so severe they give him a red bracelet, Cross takes aim at hypocritical doctors, delusional politicians, puffed-up celebrities, and others who don't or won't care about sick and disabled people. In the essays here, he turns his gaze to Paul Ryan, Lance Armstrong, "Breaking Bad", Tig Notaro, and others, and argues forcefully for the rightful place of sick people in public and popular culture.

I Hurt So Hard It Laughed is essential reading for anyone who is sick, anyone who wants to better understand what it means to be sick, and anyone wishing to grasp the patient's perspective in health care in the 21st humor.

Topics in I Hurt So Hard include: "Greatest Hits of All Time"; "Oversharing"; "Pro-tips For The Damned"; "Awareness: Weak"; "The Fight For Rights"; "Which Doctors"; "Pills And Bills"; "Politicians And Other Scoundrels"; "Poop Culture"; plus more than a dozen original short humor pieces -- including one never before published.

• Language: English
• Publisher: Duncan Cross
• Release date: Jul 8, 2016
• ISBN: 9781311778345

Duncan Cross

Duncan Cross writes "the best-written patient blog on the web", focusing on the common experience of illness, shared by all sick people no matter how different their diagnoses. He created 'Patients for A Moment', the first blog roundup for patients by patients, and contributed to two books on chronic illness. His novel, League of Mortals, is now available.

Book preview

I Hurt So Hard It Laughed.

More or less the best of Duncan Cross, 2008 — 2015

Copyright 2016 Duncan Cross

Smashwords Edition

Smashwords Edition License Notes

This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you're reading this book and did not purchase it, or it was not purchased for your use only, then please return to your favorite ebook retailer and purchase your own copy. Thank you for respecting the hard work of this author. Seriously, yo.

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Table Of Contents

Preface

I. Greatest Hits of All Time

Important Drug Facts About Prednisone

Dying And Other Things Which Did Not Happen In Little Women

What Does Crohn's Feel Like?

Don't Walk

What Does Crohn's Feel Like (Redux)?

II. Oversharing

Capable and Willing

Naughty Nurse

Gifts

Michael Wilson

When Errors Attack

The Albatross

A Sense Of Humor

Grateful For This

Who Are You Without Your Disease?

What Do You Have?

I'll Take The Rapists For $200, Alex

Avoid Stress, Avoid Life

Social Media

I Grieve

That Chronic Moment

Dude, Where's My Cure?

III. Pro-Tips For The Damned

Look Good, Feel Good

Dealing With A Chronic Is Miserable

Surprise Inside

Put It Out There On The Third Date

Disnabled

Should I Get An Ostomy?

Defining Your Disease

How To Lie About Illness (With Integrity)

Never Surrender

IV. Awareness: Weak

STFU2C

Groupthink Pink

Why Patients Don't Get Heard

Will You Bite The Hand That Feeds You?

Charity Isn't Change

Change Gang

Chronic Illness And Accidental Activism

Checklist For Charity

What The Adams-Keller Beef Is About: Narrative

Don't Ice Bucket

V. The Fight For Rights

On Rights

Who's It For?

504 Forever

What Can Patients Do?

Just Deserts

Diversity Against Difference

No Name For It

Live And Let Burn

VI. Which Doctors

Blame The Lawyers

Hypocrates

Leadership

Over-medicated

The Clinical And The Social

DirtyLittleSecret

The Ayn Rand School Of Medicine

Reprise For Dr. Alway

Also, Disingenuous Doctors

Doctors As Teachers

If You Love Your Doctor, Set Him Free

When Did Being A Physician Get To Be Such A Big Deal?

VII. Pills And Bills

Progress

Simple

What Doesn't Work

This Is My Brain Off Of Drugs

A Retraction May Be Necessary

The Magic Number (below which I don't give a s—t)

Things I Blame On Prednisone

Rebel Without A Cure

Important Drug FactsAbout Metronidazole

VIII. Politicians And Other Scoundrels

The Billy Tauzin Experience

Paul Ryan's Speech

How'd She Die?

TSAssaulted (NSFW)

So Now That Lance Armstrong Turns Out To Be Kind Of A Weasel

Regarding Shutdown

Why We Don't Have To Be So Afraid Of Suffering That We Attack Other People's End Of Life Decisions

IX. Poop Culture

Lars And The Real Bills

Out, House

Why Is Tig Notaro Joking About Cancer?

Breaking Bad In Britain

What's The Best Toilet Paper? Consumer Reports Misses The Bowl

Hooking Up In A Hill-Rom: What The Red Band Society Gets Wrong About Hospital Sex

X. Affect

Dr. Cross's Compendium Of Useful Illnesses

Ask Dr. Science: King Kong's Penis

Some Remarks On The Occasion Of This Glorious Feast

I Was A Baby Actor

I Feel We Could Have Stayed In Eden

These Urban Legends Don't Write Themselves

Troop 184 Debriefs

Ask Dr. Science: Gaydar

Dirk Bunco's Easily Solved Mysteries

Dirk Bunco's Easily Solved Mysteries II: The Case Of The Whatwazzitagain?

I Was Into Humor — Until It Got Funny

In Case Of A Water Landing

Ask Dr. Science: Why Don't Sharks Get Cancer?

Dirk Bunco's Easily Solved Mysteries III: The Case Of The Whatsisname?

Here With The Traffic...

My Cat Bombs

About The Author

League Of Mortals (preview chapter)

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Preface.

First things first: I have IBD, diagnosed at 17, a few surgeries, etc. Duncan is my real name, Cross is not — for reasons that will become obvious. That's the boring part out of the way.

I started blogging in 2008, during the debate over health reform. To understand the landscape of that debate, imagine a debate about racism without any black voices; imagine a debate over immigration with no Latino experts; or imagine a debate about abortion with no women.

That was the health care debate in 2008: lots of people talking past each other, but nobody talking to those who need reform the most: the patients. A patient, in this sense, is anyone who needs health care — maybe daily, or weekly, or even monthly.

So I started a blog to talk about health care, from the perspective of someone who needs it, and sees it from the inside. I was one of the only people doing that, so of course I made no difference at all. The reform bill that passed was not great, with respect to the needs of patients, but it was a good start.

As I wrote about reform, I became more interested in writing about illness. My blog got less wonky and more personal. I found myself writing fewer pieces about the latest report or survey, and writing more about my personal experiences. I think — I dare to believe — that I have written some things that are true and important about what it means to be ill.

And the more I wrote, the more I realized: I am terrible at blogging. I don't write often enough or briefly enough to be a good blogger. My blog had turned into a collection of essays, in no particular order. So I put together this book, to organize those posts into something more reader-friendly.

As I was putting together the book, I decided to close my blog. I don't have the time or energy to keep up the site, and there are other people doing good writing on the subject. It does not mean I am done writing about illness; just that I am done, for now, writing a personal blog about illness. I'll probably never stop writing, in some form or another.

Now some nuts and bolts: around 2011, I tried to reboot my blog, and wound up losing nearly everything I had written, a mistake I call the Great Deletion. Most of the posts prior to that year are reconstructed from the Internet Archive. Astute readers might notice a difference in tone and content pre- and post-2012.

For the posts in this collection, I've left them as they appeared on my blog, with only minor edits for typos. Where appropriate I include notes explaining the post. I've left out some posts that are obsolete, or too arcane, or that I don't like — which means sometimes a post refers to another post not included here. Trust me that you are not missing anything.

I am including links where appropriate, but some will be defunct. Such is the Internet. I am not including comments — except in one case — to avoid having to ask permission from everybody who commented. Don't get me wrong: I really appreciate the dialogue and feedback I got from readers online, and will miss it.

I hope you enjoy this collection, but more than that: I hope it helps. If you like what you read, you might also consider checking out my semi-autobiographical novel, League of Mortals. Thanks.

Duncan Cross

July 2016

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I. Greatest Hits of All Time

My blog has a stats-tracker, and these five posts are the most read of anything I wrote. The first one, about prednisone, blew up on Reddit for a couple days, but also speaks to the experiences lots of people have with that horrible drug. The next post, about Little Women, I think is primarily popular with students looking for something to copy for their homework; I 'thought about not including it, but it does give a nice preview of League Of Mortals. After that, 'What Does Crohn's Feel Like', gets so much search traffic that I wrote a follow up which also gets a lot of traffic. 'Don't Walk' is one of my favorite posts, and struck a nerve for many readers.

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Important Drug Facts About Prednisone

April 2013

(note: this is a parody, not actual medical information, but maybe should be. Consult your doctor.)

PREDNISONE — ORAL

(PRED-nih-sone)

COMMON BRAND NAME(S): Deltasone, Howilliatone, Gonnadiealone

USES: Prednisone is used to treat conditions such as arthritis, blood disorders, breathing problems, severe allergies, skin diseases, cancer, eye problems, inflammatory bowel disease, bad poison ivy, immune system disorders, and really anything involving inflammation.

Prednisone belongs to a class of drugs known as corticosteroids, which is misleading because it will not make you ripped like a body builder. Quite the opposite, in fact. Also, corticosteroids killed JFK. Seriously.

There's also a whole class of drugs called 'steroid-sparing agents' — the idea being they may not be great drugs, but at least you don't have to take 'prednisone.

HOW TO USE: Take this medication by mouth, with food or milk to prevent stomach upset, as directed by your doctor. Take the tablet form of this medication with a full glass of water or juice but not alcohol because you do not want to be any more impaired while you are on this drug. Seriously: drinking is a bad idea. If you are prescribed only one dose per day, take it in the morning before 9 A.M., then kiss your family good-bye, lock yourself in a quiet room, and wait for the monster to show its face.

Take this medication exactly as directed by your doctor. Follow the dosing schedule carefully. The dosage and length of treatment are based on your medical condition and the doctor's s.w.a.g. as to what's wrong with you. Any responsible physician would prescribe literally any other drug they could, so the fact that you are on this one means you are on thin ice already. Do not screw with your doctor's instructions.

Do not stop taking this medication without consulting your doctor. Some conditions may become worse when this drug is suddenly stopped, like the urge to end your life in a spectacular fireball. To prevent immolation, your doctor may reduce your dose gradually, which will take f-o-r-e-v-e-r and be the most miserable several months of your life. That's right, loser: you have to keep taking the drug so it won't be more of a danger to you than it already is. Yay, medicine! Report any new or worsening symptoms immediately.

Tell your doctor if your condition persists or worsens, so they can prescribe you more prednisone, which means you will have to taper off it even longer.

Corticosteroids may mask some signs of infection, but we're not going to bore you with medical jargon and just say: it will kill you, or at least mess you up permanently. Consult your doctor — or just CYD, because you'll be seeing a lot more of it.

Before taking prednisone, tell your doctor or pharmacist if you are allergic to it; or if you have any other allergies. The only other way you can avoid taking prednisone is by telling your doctor it gives you 'suicidal ideation'. Trust me — they'll know what that means. CYD.

Before using this medication, tell your doctor or pharmacist your medical history, especially of: current/past infections, heart problems, high blood pressure, thyroid problems, kidney disease, liver disease, stomach/intestinal problems, bone loss, mental/mood disorders, eye diseases, diabetes, mineral imbalance… of course, the fact that you are reading this from the insert with your medicine means the doctor has already prescribed the drug — so, really, what are you gonna do at this point?

SIDE EFFECTS: Nausea, vomiting, loss of appetite, heartburn, trouble sleeping, increased sweating, or acne may occur. If any of these effects persist or worsen, CYD. Y D will not do anything, probably, but C nonetheless.

We were kidding about loss of appetite, you pig. The odds are about 1000% that you will eat everything you can fit in your stomach while on prednisone, to the point that you are achingly full and yet still ravenously hungry. Just for grins, we'll put in some language like, Tell your doctor right away if any of these unlikely but serious side effects occur: …unusual weight gain. And your doctor will nod, and write it down, and send you home to dig the fat jeans out of your attic. CYD, for all the good it will do. Those marks on your butt are called 'stretch marks', by the way. Try cocoa butter.

Other serious side effects may include: puffy face, also known as 'moon face', also known as 'hey-did-you-get-your-wisdom-teeth-out?'. It's not serious. Literally nobody in the history of medicine has ever cared about moon face. But have fun looking at all your photos from now and trying to remember how miserable you are. Also your feet, ankles, and hands might swell — it's like they invented a pill that creates PMS, instead of relieving it. You can CYD if you want to.

Let's come back to 'trouble sleeping'. Do you know when your long-term memories are formed? In sleep, which you won't be doing while on this drug. So good luck remembering a single g—d— thing important about this period in your life. In school? Final exams coming up? Good luck with that. But CYD, and maybe try melatonin. Savor every moment, because it will be a foggy blur a year from now.

The sleep thing also affects your day-to-day functioning, in ways that are hard to predict. For example, you might find yourself getting into car accidents because your brain is so adled you can't keep your eyes on the road. But then when the police show up, you will have no memory at all of how the accident happened, so you might get breathalyzed. They don't test for prednisone, so you're good to go. Don't tell your auto insurer.

Prednisone will also impair your judgment in weird ways that we just don't understand. Like buying crap: two weeks into this drug you may discover you have an insatiable need to collect all the Thundercats merch you can find on E-Bay, because that was an awesome cartoon and gosh being a kid was fun. Later you can confront the fact that just because you bought it online, does not mean anybody else wants to. And this is the low end of the spectrum: you might buy a car, or a pet, even a house, all because this drug made you believe it was absolutely the best decision ever. You think your doctor cares about your mortgage? Probably not, but maybe they want to decorate their office in Thundercats toys. No? Sigh.

Also tell your doctor right away if you get mood changes, ideally while sobbing uncontrollably, which you will be doing plenty of. Also, angry. Also, depression. Also, romantic. You'll watch stupid commercials for baby products and they will just slay you. You will launch into furious HULK!-SMASH! rages for no reason at all. You will fall in love with that person who is totally wrong for you, like the atheist smoker who thinks your deepest-held beliefs are a total joke, and you will wring your heart empty falling in love for two weeks, at which point you will fall forever in love with the hot nurse in your doctor's office for two weeks, lather, rinse, repeat. You might even try to kill yourself. The best part is that some of these changes might be permanent: you could still be an emotional cripple long after you stopped taking this drug. CYD on the suicidal ideation, of course.

This drug may mess up your vision. If you wear glasses or contacts, expect your prescription to change a point or two for every year you are on the drug. It can also cause glaucoma, and also cataracts. The good news is that the cataracts will be on the periphery of the lens, so they won't need surgery. What, that's not good news?

You may experience unusual hair growth. We mean body hair, of course. Don't CYD, you gross shaggy monster — just Nair it or whatever. Yuck.

Just to give you a break, here's one good thing: mosquito bites won't itch as much when you are on prednisone. Sorry — it was all we could think of.

Remember that your doctor has prescribed this medication for reasons that sound important but really boil down to the fact that they have run out of ideas. Many people using this medication do not report serious side effects, but everyone around you knows something is wrong and you just won't admit it. C to the Y to the D.

Multiple choice: this drug can give you a) cancer, b) Addison's disease, c) diabetes, or d) all of these. Hint: CY*D*.

A very serious allergic reaction to this product is rare, but possibly not a bad way to go if you're already considering killing yourself. Our attorneys nonetheless recommend we tell you to get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash (not stretch marks), itching/swelling (especially of the face/tongue/throat — but not, you know, 'moon face', because that's totally normal), severe dizziness (moderate dizziness okay), trouble breathing (unless you're taking this for sarcoidosis, in which case we mean more trouble breathing).

Here's some other things this drug might do to you, which are very serious blah blah blah CYD: muscle pain/cramps, irregular heartbeat, weakness, signs of infection (such as fever, persistent sore throat), vomit that looks like coffee grounds (unless you've been eating coffee grounds, weirdo), black/bloody stools, severe stomach/abdominal pain, slow wound healing, thinning skin, bone pain, menstrual period changes, seizures, easy bruising/bleeding. See! Why! Dee!

Now the best part: this is not a complete list of possible side effects. If you notice other effects not listed above, contact your doctor or pharmacist. All that time you're not sleeping you can spend wondering if every little thing wrong with you is a side effect of prednisone. Hint: yes; yes, it is. CYD.

GENERAL PRECAUTIONS: Here's a mouthful: drug-induced secondary adrenocortical insufficiency may be minimized by gradual reduction of dosage. This type of relative insufficiency may persist for months after discontinuation of therapy. Since mineralocorticoid secretion may be impaired, salt and/or a mineralocorticoid should, be administered concurrently. Did you get that? No? Well, remember JFK? This is how he died: steroids gave him Addison's Disease ('adrenocortical insufficiency') which impaired his bone development ('mineralcortoid secretion') and gave him a bad back. He had to wear a back brace much of the time, which is why he was still sitting up in the limo when the second bullet popped his melon. Everyone else ducked. Seriously. And now you're on that exact same drug. You really want to brush your teeth with the most fluoride you can buy, because the mineralcortoid thing means your enamel will rot otherwise.

Corticosteroids should be used cautiously in patients with ocular herpes simplex — yes, eye herpes, you animal — because of possible popped eyeballs. Just FYI, you know. Definitely put that up on YouTube if it happens, because we are dying to know what it looks like.

The lowest possible dose of corticosteroid should be used to control the condition under treatment, ideally zero mg-Kelvin/day, and when reduction in dosage is possible, the reduction should be gradual, or else you might just go ahead and kill yourself.

Psychic derangements may appear when corticosteroids are used, ranging from euphoria, insomnia, mood swings, personality changes, and severe depression. This is why Jane Pauley disappeared from TV a while back. Did you know she's married to the Doonesbury guy? Also, existing emotional instability or psychotic tendencies may be aggravated by corticosteroids. You literally cannot C enough Ds on this one.

Kaposi's sarcoma has been reported to occur in patients receiving corticosteroid therapy. This is the same cancer that people with full-blown AIDS get, so good luck explaining that to your parents.

(again with the note: this is a parody, not actual medical information, but maybe should be. Consult your doctor. This list was bastardized from RXList,[1] which has more accurate information that might save your life. Read everything that comes with your prescription and CYD!!)

[1] http://www.rxlist.com/deltasone-drug.htm

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Dying And Other Things Which Did Not Happen In Little Women

September 2012

Post on Kevin, MD [1] mentions Beth's death scene in Little Women, saying it's one of the most profound literary dealings with death available. The only problem is that Beth doesn't die in Little Women. Beth gets sick in Little Women, but she dies in the sequel, Good Wives — a different book entirely, but usually packaged in one volume with Little Women.

So that's a quibble — the difference between the two books — but it gets to a bigger point: Alcott changes her tune about Beth's illness and death from one book to the next, with the result that Beth's death while sad is kinda pointless. This happens to be a major plot point in my novel crime against decency, League of Mortals, so I will just quote at length to make my point. In LoM, the main character has been assigned to write a paper comparing Little Women to another book; his teacher gives him an 'F' on the paper, and student and teacher end up arguing about it in the principal's office:

He didn't even do the assignment, she retorted. The assignment was to compare and contrast two books, and he only read one.

Mr. Peary? Wallace redirected the question to me.

Well, uh, as I pointed out in the paper, modern editions of Little Women usually are two books published as one, I said. First was Little Women, then a book entitled Good Wives –

Titled, Mrs. Strunkel corrected.

Good Wives came out a year or so after Little Women as an entirely separate sequel. So I read them both and compared them to each other. They're different books.

I assigned them as a single book, Strunkel insisted.

Can you tell me three ways they're different? Wallace asked. He turned a few pages into my paper.

Lemme see, I said. Well, in the first book a doctor comes to see Beth, and Alcott describes her illness in almost clinical detail. In the second she's a lot more vague, and Beth never sees a doctor. It turns out that the real Beth, Alcott's sister, saw no less than three doctors -

Fewer, Strunkel interrupted.

Annie, please, Dr. Wallace said. Go on, Wesley.

The real Beth saw at least three doctors, and Alcott spent years paying them off after Beth's death. The second difference—Beth's character in the first book is a lot more well-rounded. In the second she's more or less reduced to a stereotype of a sick person; I call it the Afflicted Saint in the paper.

Yes, I saw that, said Wallace.

Right, I continued. "So you don't get any sense of her personality from the second book, just that she's doomed to die. It's like two years go by and Alcott has already forgotten who her sister really was.

And third, Jo's character doesn't blame herself for Beth's illness in the second book, but she does in the first.

Perhaps there were two different illnesses, said Strunkel.

"No, I think Alcott is pretty clear that there's a link between the scarlet fever in the first book and the illness in the second book. One of the medical books I read said rheumatic fever is known to follow some cases of scarlet fever, so like, years after the person recovers from the fever, they die of congestive heart failure—which fits the description of Beth's illness through the two books. But Alcott doesn't report any of this in the second book. Beth more or less just lies down and dies, and gives those speeches about how it must have been her destiny or God's will or something.

As I said in the paper, the result is that you get two different approaches to Beth's illness—the more modern view in the first book, where the illness isn't part of some larger cosmic process.

What do you think accounts for the differences? Wallace asked.

Well, maybe that Alcott didn't really understand how scarlet fever turned into rheumatic fever. But it seems to me that maybe Alcott was being too personal and that kept her from being consistent through the two books.

How so? asked Wallace, smiling a little.

I saw in my peripheral vision that Mrs. Strunkel had tensed up, but I did not dare turn and look at her.

It was pretty clear in the first book that Jo's laziness caused Beth to get sick. If Jo is Alcott's alter ego, she's probably expressing her own sense of guilt about her sister's illness. But there was nothing in Alcott's diaries to suggest she felt responsible for Beth's death. So in the first book, Alcott is blaming herself for Beth's illness, but in the second book she doesn't blame herself for the death. My guess is the idea was too painful, that she just couldn't bring herself to do it. But that meant Alcott had to come up with some alternative explanation for the death in the book. So she goes with destiny.

And you don't like that, said Wallace.

No, sir, I said. Destiny is a cop-out.

What did you call it? The 'second worst diagnosis in the history of literary medicine'? Wallace said.

Right, I said. "I mean, it's one thing in a book, but if books matter to how we