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.
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. I 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.
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.
26 February »
(This is parody — not actual medical information.)
METRONIDAZOLE — ORAL
COMMON BRAND NAME(S): Flagyl
USES: Metronidazole is used to treat trichomoniasis, amebiasis, and anaerobic bacterial infections of the skin, bones, joints, lower abdomen, heart, lungs, brain, and genitals. Did we miss anything, you dirty birdy?
Metronidazole is also used to treat diarrhea in cats and dogs.
Metronidazole is NOT used to treat the common cold, and won’t help, and you were an idiot to ask your doctor for antibiotics to treat a virus. That’s like putting out rat traps to kill your cockroaches.
DO NOT DRINK ALCOHOL WHILE TAKING METRONIDAZOLE.
HOW TO USE: Take metronidazole according to your doctor’s prescription. Be sure to take all the pills. Every. Single. One.
Do NOT let the pills dissolve on your tongue. Deep throat it, and wash it down with orange juice or something else with a good acid flavor.
DO NOT DRINK ALCOHOL WHILE TAKING METRONIDAZOLE. You think we’re kidding, but we’re really, really not. NOT EVEN A LITTLE BIT.
SIDE EFFECTS : This drug will mess you up, no lie. Whatever’s wrong with you better be serious. Consult your doctor (CYD) if you have any neurological symptoms. We’re talking convulsive seizures, brain swelling, spinal cord inflammation, weird nerve stuff in your eyeballs or toes and fingers — like a numbness or lack of sensitivity. Seriously, we just read a list of ten-syllable words and have no idea what most of them are, but they sound super bad.
The good news is that the most likely thing to happen is gastric problems, especially nausea which affects 12% of patients, and everyone who tries to drink while taking metronidazole. You might lose your appetite (that’s anorexia, for you Kappa Thetas), diarrhea, epigastric distress, etc. etc. etc. What? You’re taking this for bowel disease? Does irony still smell delicious after you’ve digested it and crapped it out? Just wait — it gets better.
Here’s some other things that can go wrong:
Mouth: Prolonged use may lead to a change in your taste sensation, sometimes referred to as “Met Mouth”. Sour fruits, juices, or candies will help with that, especially Altoids Sours, which they no longer make. So, yeah. Don’t CYD. Nobody cares.
Furry tongue, glossitis, and stomatitis might mean an overgrowth of Candida, a fungus which is also responsible for vaginal yeast infections in women. Try explaining that to your friends. Candida infections in your mouth are called “thrush”. When you tell your doctor, he might ask you if you have had a blood transfusion, sex with men, or use IV drugs — because the only adults who get thrush anymore all have full-blown AIDS. Or are taking metronidazole. Try explaining that to your girlfriend. It’s probably not a big deal, but CYD just in case it’s really the AIDS.
Hematopoietic: This stuff will destroy all kinds of blood cells. Sometimes.
Central Nervous System: Here is that list of MCAT words: Encephalopathy, aseptic meningitis, convulsive seizures, optic neuropathy, peripheral neuropathy, dizziness, vertigo, incoordination, ataxia, confusion, dysarthria, irritability, depression, weakness, and insomnia. We’re batting about 60% on these — dizziness,vertigo, confusion, and everything after dysarthia — but otherwise CYD.
Hypersensitivity: more MCAT words — Urticaria, erythematous rash, Stevens-Johnson Syndrome, toxic epidermal necrolysis, flushing, nasal congestion, dryness of the mouth (or vagina or vulva), and fever. Definitely CYD for that dry vagina/vulva. We want your lady business to be smooth like satin. Probably CYD for everything else, too. Can’t hurt.
Renal: Dysuria, cystitis, polyuria, incontinence, and a sense of pelvic pressure. You have a 1 in 100,000 chance of having darkened urine while on this drug, for reasons we don’t understand. Don’t freak out. The dark pee is okay. Everything else, CYD.
Other: Remember how you can get yeast infections in your throat, and you can get dryness in your vagina? You can get vaginal yeast infections, too, while on this drug.
DO NOT DRINK ALCOHOL WHILE TAKING THIS MEDICINE. If you do, you may experience abdominal distress, nausea, vomiting, flushing, or headache. Seriously: we were on this drug for like three days, when we went to Shula’s in the Dolphin hotel at Walt Disney World. The menu is written on a football, which should be a red flag, but someone else was buying. Anyway, when the waitress handed us the wine list, we said, “I can’t drink alcohol”. So when we were three bites into our crème brûlée, we realized there was something weird about it. We asked the waitress, “is there alcohol in the crème brûlée?” She said, “no”. We ate a few more bites and decided she was definitely wrong — and it turns out there was Grand Marnier in the crème brûlée. Who puts Grand Marnier in crème brûlée? Chefs who write their menus on footballs, it turns out. By the time the check had come, we were super nauseous — like six-year-old-who-ate-too-much-cotton-candy-and-soda-pop-on-the-Mad-Tea-Party-tea-cups-ride nauseous. So on the way out, we ask to speak to the manager, who treats us like garbage and basically kicks us out, not that we were asking for anything except an apology. We spent the ride home with our guts turning somersaults, windows open for the breeze on our face. Thankfully, we did not blow chunks, but Jesus were we unhappy. And that was maybe a half-tablespoon of Grand Marnier, cooked in crème brûlée, after a big dinner. So two things here: obviously, do not eat at restaurants where the menu is written on a football — or really, any piece of sports equipment — and DO NOT DRINK ALCOHOL WHILE TAKING THIS MEDICINE. WE ARE SO NOT KIDDING ABOUT THIS.
This one is just for us: Crohn’s disease patients (right here!) are known to have an increased incidence of gastrointestinal and certain extraintestinal cancers. There have been some reports in the medical literature of breast and colon cancer in Crohn’s disease patients who have been treated with metronidazole at high doses for extended periods of time. Ohmigod, breast cancer? Really? Yes, finally — thank you, baby Jesus, for giving me a disease people understand. We were on this for like three years at one point. We are going to be so disappointed if we do not get breast cancer. Seriously, we saw that episode of Archer, so we know men can get it, too. A cause and effect relationship has not been established. Crohn’s disease is not an approved indication for Flagyl (metronidazole) — said none of our doctors, ever.
GENERAL PRECAUTIONS: Before taking metronidazole, tell your doctor or pharmacist if you are allergic to it, or if you have any other allergies, or if you have liver problems, or nervous system disorders, or blood disorders, or Crohn’s disease so you don’t get chesticle tumors.
This drug may make you dizzy, but not good, fun Vicodin dizzy. Just blah dizzy. Do not drive or do anything useful until the world stops spinning.
During pregnancy, this medication should be used only when clearly needed (you think?). Discuss the risks and benefits with your doctor. Also, this medication passes into breast milk and probably anything else you secrete, too. This CYD goes out to all my baby mamas.
AVOID ALCOHOLIC BEVERAGES WHILE TAKING THE MEDICATION. AVOID THEM LIKE JURY DUTY IN COLOMBIA — and for at least 1 day (3 days if you are taking the oral capsules) after finishing this medicine because drinking alcohol may result in severe stomach upset/cramps, nausea, vomiting, headache and flushing. Got that yet? Do you understand the point we are trying to make about this drug vis alcohol? Do you need more information? In Russia, where alcohol is cheaper than bottled water, where vodka is sold is pop-top cans, where glue solvent is a considered a nice buzz, there are three ways to get out of drinking:
-”I have an allergy” — which is the cruelest joke God can play on a Russian;
-”I am an alcoholic” — which is considered approximately as embarrassing as admitting you can’t get an erection (for dudes);
-”I am taking antiobiotics” — because they know you’re talking about metronidazole.
So if this drug stops RUSSIANS from drinking alcohol, why would you even look at a glass of wine? Even mouthwash is a risky proposition at this point. So for the last time, DON’T DRINK ALCOHOL WHILE TAKING THIS MEDICINE.
And if you do drink — which, DON’T — definitely YouTube it.
(This is parody, not actual medical information. It was bastardized from RXList, which has real, actual medical information. So does your pharmacist. So does your doctor.)
26 February »
Leslie is hosting a carnival for the Partnership for Palliative Care, in which asks: “Why do you blog or share through social media about your illness?”
My answer is pretty simple: I blog because I’m not alone.
When I was diagnosed in 1994, blogs were still several years in the future. I did not even have a good Internet connection, and it never occurred to me that anyone would want to talk about their illness — my illness — online. I was scared of my diagnosis, scared of being known as the guy with that thing — to the extent that I avoided support groups or any sort of organization centered on my disease. I don’t think I met another person with my diagnosis for almost 10 years.
In 2003, I got to be friends with someone else with the same disease, and she showed me a LiveJournal community dedicated to it. This was my first foray into social media. Suddenly, I was not alone in a big, big way. Participating in the LJ group also meant I had to have my own account — thus my first blog. I fiddled with it, posting jokes or rants or whatever.
Within a few years, I was pretty active in online patient communities. Then in 2008 or 2009, health care reform became a big deal; obviously, that issue mattered a lot to people with serious chronic illness, and yet I found that most social media ostensibly for patients had a gag on ‘political’ discussions. Worse, there were very few patients represented in the general public discussion. I was frustrated at the gaping silence from patients and patient advocacy organizations.
That frustration prompted me to start this blog, to write about health care reform from a patient’s perspective. It wasn’t that I wanted to be that voice, so much as I worried nobody else would. And I can say with some confidence that I made not a rat’s-ass of difference.
But I also started blogging about illness generally, stuff not focused on health reform. After a while, those posts — and the interactions they created — got to be my favorite part of blogging. I wrote many of my early posts wondering if anyone would bothering read them — a good example being my sex in hospitals post; after that post went up, I got an email from a kid locked up in a hospital with brain cancer, away from his girlfriend, but glad to know he was not alone.
I was so deeply gratified to discover that folks benefit from my blogging — that I can help, in my own small a way. Now when I write, I just assume someone somewhere has a similar problem, and wants to know they are not alone. I can write about my illness online, in public — that is, I can blog — because I know I am not alone.
Most importantly, my blog has helped me realize how incredibly not alone we patients are, how universal the experience of illness can be. Early on, I made a decision not to focus too much on my specific diagnosis, and to look at my disease more abstractly. Of course, in most social media, patients tend to congregate according to their diagnoses — so there are IBD blogs, and diabetes forums, and Lupus FB groups, etc.
The problem is that the specific diagnoses we get branded with are only really useful for the clinical aspects of our diseases. There’s a lot more to illness than a diagnosis, and if we stay blindered by what the doctors call us, we miss out on the comfort of the broader community. There are few folks writing and thinking across diagnostic boundaries, but social media is still much too segregated by diagnoses.
That was the main reason I started Patients for a Moment — to try to get patients talking to each other about that common experience. I’m proud of what we’ve done — Leslie organizes it now, and has done a great job — but I still think there is a long ways to go, to break patients out of their clinical silos. I think social media is an unalloyed good thing for patients, but I also think it will get better and better as we start exploring outside of diagnoses and learning how much we share with other patients.
Social media shows me every day that I am not alone, and I’m glad to pay it forward through this blog.
24 February »
This previous post may help you parse some of the technical language.
18 February »
Kevin, MD has reposted my post, The Best Thing A Doctor Ever Did To Me. If you missed it the first time around, might as well read it over there. Just a couple of comments so far, but not the usual outrage my posts attract. I guess that’s better somehow.
14 February »
I am hosting the March edition of Patients for a Moment, and I want to talk about books. There are two parts to this month’s PFAM:
Part I. PFAM
The first part is a standard PFAM prompt: what is your favorite book about illness?
I figure since everyone who blogs is a writer, and most writers are readers, there are probably a lot of good answers to this question. Lately I have been thinking a lot about narratives, about the stories we tell about illness, and how that helps us think (or not) about illness as a social phenomenon. I’m interested to know what stories — fiction or non — speak to your experience.
NOTE: Burnett’s The Secret Garden IS BANNED FROM THIS PFAM. If you submit to me about The Secret Garden, I will not include your post.
If you want to participate in this part, it’s same as always — send the following to email@example.com:
Your name as it should appear
You blog’s name
Your post title
Your post URL
Deadline is March 19th.
Part II. The ILLiteracy Project
The second part — and you can do either or both — is a bit different: read Laurie Edwards’s excellent In the Kingdom of the Sick: A social history of chronic illness in America and write a short response. I am not looking for book reports, so don’t tell us what’s in the book: I will take care of that.
Write about what the book did for you as a reader and a patient. Write about how it spoke to you, what resonated, and what you think Laurie missed. Write about how it helps you understand your life.
If you want to participate, but feel like you can’t afford the book, let me know and I’ll see what can be done. It’s not a long book, and it’s easy to digest, but give yourself enough time to get through it and write a thoughtful response.
If this works, I would like to do it every three months or so, and make The ILLiteracy Project (or “TIP”) a regular thing. As I say, I am interested — nay, obsessed with the idea of narrative as a way to understand illness, and would like to start developing as a community a sense of what works are important, and which are evil and ignorant (e.g. The Secret Garden).
The ultimate goal is to build a list of ‘canonical’ sick lit books, so that somebody adjusting to a new diagnosis has a good place to start reading and thinking about their life ahead. This is not something that existed when I got sick, but I think it would have helped a lot.
Participation is basically the same — send the following to firstname.lastname@example.org::
Your name as it should appear
You blog’s name
Your post title
Your post URL
Deadline is also March 19th — except that if you send in earlier, I might send you a couple follow-up questions to tease out your reaction. My goal is to be a little more hands-on with this than a normal PFAM host might be.
Either way — or both — I look forward to your posts. I should have both parts up by March 21st.
7 February »
For this month’s Patients for a Moment, Leslie asks: “How do you cope with the winter blues?”
In a word: Florida.
I’m headed there for a week, to get away from the cold and the snow and the gloom. I grew up in Florida, so my thermostat runs cool: I’m only really comfortable in warm-to-hot weather. I don’t even like air-conditioning, if I can avoid it.
I never lived anywhere but Florida until I left for college. In high school, when we read about people visiting Florida or Arizona or somewhere else warm for their health, it always seemed dubious that climate could be such a big factor. It took me one winter in the mid-Atlantic region to understand, and now I totally get it.
I know that I’m not all that far north, that our winters are comparatively mild — yet I believe this is as far north as it is safe for me to live. A little cold and snow won’t kill me, no — but a little more might. Best play it safe, I think.
And this winter, as Leslie suggests, has been particularly bad. In January I contracted pneumonia — not a terrible case, and it cleared up with some antibiotics and cough syrup, but I am still wiped out. In better weather I could be out and about, getting some exercise, rebuilding my strength, but these days it’s hard to find the right coincidence of time and weather.
So now I’m worn out, and that makes the cold worse — biting, gnawing, aching — and I just can’t wait to get out of here.
So I’m headed to Florida.
5 February »
In fall of 1994, I was sixteen years old and sick. I had lost a lot of weight, reduced my diet to BRAT and roast chicken, filled a half-dozen stool samples, even tried a few prescriptions — and nothing seemed to help.
By that point I was seeing a gastroenterologist, Dr. C. After a pointless barium enema and follow-through, Dr. C performed a colonoscopy. From that, he gave me a definitive diagnosis: Crohn’s Disease.
In a way, I was extremely lucky: I had only been symptomatic for a few months. Many CD patients take years to diagnosis, and have to go through several wrong diagnoses before finally getting the right one. I had only been through a few low-hanging guesses, like giardiasis and lactose intolerance, before Dr. C brought out the ‘scope.
As much a relief as my diagnosis was — and the medicine that came with it — it was also terrifying. I was suddenly stuck with this thing, this name, that would follow me around for the rest of my life, causing problems, causing misery, maybe killing me. It was an incredible jolt: my doctor said a couple words, and suddenly I was a different person, my childhood over.
Dr. C was not the kind of doctor who talked to parents instead of patients. He was always very direct with me, and I appreciated it. But just one time, the day I was diagnosed, he did have a private word with my parents. He told them, “This is his thing — he needs to deal with it.” That, hands down, is the single best thing a doctor has ever done for me.
I had a highly-protective mother — not so much a ‘helicopter’ hovering overhead as an AH-64D Apache Longbow hunting for targets — and the illness thing had her on full alert. She would have been counting my pills and watching me swallow them, planning out my meals, weighing me twice a day — maybe even photographing my stools, if she thought it would help. Instead, she gave me the space I needed to learn to deal with my problems, because Dr. C told her to.
I mean it when I say my childhood ended with my diagnosis. Illness is an adult problem: learning to deal with illness forced me to grow up. Some parents don’t let their kids make that transition (and for young kids, rightly so) — but my parents did. I can’t imagine how psychologically hamstrung I would be otherwise.
There’s another side to this: Dr. C did not say, “This is my thing — let me deal with it.” He did not claim my illness as his problem. He knew he could help, but recognize that it was ultimately my illness. The next year I went to college, and wound up with a doctor who told me, “You worry about school — your disease is my job to worry about”. That guy nearly killed me, and I never made that mistake again.
I can’t remember when my parents told me what Dr. C said — months later, maybe years — but I will always be grateful. That one firm sentence had profound effects on my prognosis, my adulthood, and especially my sense of self. As important as the clinical side of my disease is, Dr. C was also looking out for the inevitable social consequences of my illness — and he helped me prepare for them. I am a better, fuller person for it.
I may be sick, I may be crippled with illness, I may desperately need help — but I never forget that this is my thing, and I need to deal with it.