When I was first diagnosed, my doctor told me I had to take it easy: too much stress would make me sicker. That meant no sports, no hard classes, etc. So I stopped going to crew practice, and dropped all but a couple of my honors/AP classes in high school. Big mistake – I was miserable.

The class thing was done, but later that year I started going back to crew practice. Guess what? It didn’t make me worse. And the next year, I started college off with a courseload full of honors classes. It didn’t make me worse. And after two years of that, I transferred to one of the best schools in the world, and was still on the crew team – and it didn’t make me worse.

Point being that a lot what I thought was illness keeping me from doing things was in fact other people keeping me from doing those things. The only thing I really wanted to do before I got sick that I haven’t been able to do is join the Air Force, but to hell with that. I’m so near-sighted, it’s not like they’d ever let me fly, and I discovered that I have a serious allergy to authority figures anyway.

Otherwise, I’ve had a life that’s more full than many healthy people I know. I graduated from that tough college, participated in and witnessed some historic events, got a Master’s overseas, spent some time in countries with no health care system whatsoever, got married, et cetera. I can’t think of anything I haven’t or can’t accomplish that’s due to my illness, that’s anything I really want to do. Maybe thru-hike the Appalachian Trail, but my life is so full right now that I don’t have the eight months to spare.

A lot of my accomplishments are due to what I think is the right attitude: I’m not afraid to fail. After I graduated from college, and was thinking about making some pretty big changes, I had a doctor who was intense and aggressive in his treatment. I was planning a trip to Latin America, and worried about my health, and wanted his blessing; he said, “Look, this isn’t for me to say. I think you can do it, but it’s more important whether you think you can do it. And if you’re not sure, you can always bail. But don’t not do it just because you’re worried you might have to bail at some point.” I went, I had a good time, and didn’t get sick at all.

So when it comes to stuff I want to do, I take the same approach: I try it until I discover I can’t do it. And I have been surprised at the things I can do, even when I thought I couldn’t. Granted, my illness is a factor, and something I often have to work against or around, and there have been a couple minor things that were just too difficult, but I’ve had a pretty amazing life, nonetheless.

What I have done is rather a lot, and what I aspire to is just about everything else.

But I’ve also had sleep disturbances, sexual side effects, and an excessive appetite the entire time. And lately I wonder whether I would be better off without paroxetine; after all, I can’t take it forever. So I talked to my doctor, and he agreed that I could start to wean off the drug. He told me to watch out for “SSRI discontinuation syndrom”, and I’m quoting his email here:

which is common and can cause mild dizziness, fatigue , headache, nausea, and diarrhea. Uncommonly, it can cause various tingling and nerve distrubances

I’ve been taking half my dose since Wednesday, and I yesterday I woke up a little dizzy. I thought, well, “it should only be mild, and it’s not unexpected”. I decided mild dizziness was not a problem as I went about my day, which included some driving – in fact, a two-hour round trip to get to a meeting I had promised to attend.

As near as I can tell, serotonin does two things: mostly, it works in the gut to help regulate intestinal movement – hence the abnormal appetite. Secondly, it works in the brain to help regulate social interactions. And the way SSRIs work is to keep the serotonin in your system by preventing it from being soaked up by your brain. If your brain is inhibited from re-uptaking the serotonin, then it stays better attuned in various stressful situations.

The thing about driving is that even when you’re in a car by yourself, it’s a surprisingly social activity. You have to interact with the drivers around you, and obey all sorts of rules and conventions, and all the while without any easy way to communicate directly. And what my doctor apparently did not tell me is that a lack of serotonin can make you deeply anti-social.

So after a half-hour of driving – in heavy traffic – my brain had sucked up all the serotonin my body was going to produce. I was a mess, and a wreck waiting to happen, and not even halfway to my destination. The lack of serotonin made me defensive and paranoid and irritable. I screamed at one driver for cutting into my two-car-lengths’ safety zone, while I was trying to focus intently on the car ahead of me and thinking, “To hell with the mirrors, Watson*, they’re nothing but bad news!” I seriously considered stepping out of my car at a red light and beating the crap out of the driver’s new Ford with a tire iron. I knew it was a “bad idea”, but I also knew it would make me feel a lot better. I talked myself out of it while the light changed.

At that point I was already headed home. I realized there was just no way I was going to make it to the meeting and back again without killing somebody. I made it home safely, took the rest of my dosage, and tried to chill out.

Despite this being a minor debacle, I did some things right. First, I made a point of talking to my doctor about what could go wrong, and what to expect, and how to react. Second, I kept double-checking myself to make sure I was behaving normally – a habit I learned while taking prednisone, the gift that never stops giving you nightmares. Had I not been so well-informed, and so attentive to my brain, yesterday might have gone a lot worse.

None of this is going to keep me from going off paroxetine, and it wouldn’t keep me from taking it again at some point. But, like a lot of things, it’s just going to be a little tougher than I expected. In the meantime, I think I’ll probably ask someone to hide that tire iron from me.

(*Coach Watson taught drivers ed and tennis at my high school. He insisted that we check our mirrors every ten seconds while driving, and eight to twelve times before even turning on our blinkers. He wasn’t a very good tennis coach, either, if memory serves.)

….I discovered that I had to go straight to college: my parents’ insurance would no longer cover me if I took a year off between. So I went to college with no real ambition or focus, and frittered away two years taking classes like Honors Drama, Beginning Drawing and Scuba Diving — mostly at taxpayer expense, because I won a generous scholarship to the state university — before I finally got my act together and transferred to a more reputable school.

It’s not too much to say the more reputable school saved my life. In addition to being aimless,  I was also pretty depressed about my life prospects whilst at the state university. The fact that I spent my first year of college tweaking on predisone helped not at all.

Detachment.

I have found that the only real way to avoid disappointment is to avoid expectation. A goal not set is a goal that cannot be quashed; you need not fear a failure to accomplish that which is not important to you. This may sound defeatist, but it’s more accurate to call it transcendant.

It’s not that I don’t have dreams or hopes, but I deliberately keep them so vague as to be entirely flexible. I want to be a good person – but it doesn’t matter how that comes about. I want a family – but I don’t care whether the children are mine, adopted, or grown from a test tube. I want to teach other people to live better lives despite illness – but if I suddenly cannot blog anymore, I will find some other way.

There are specific things that I do in my life, and I very much want to do them – but I see these activities as means to ends, not the ends themselves. Since my diagnosis, I’ve changed my career plans so many times, it would make a guidance counselor’s head spin right off. I’ve learned to quit defining myself by those plans, and to sculpt my self-esteem from something less concrete yet more durable. If I never sell even a single copy of League of Mortals, that won’t keep me from thinking of myself as a writer. I consider relatively few possessions important, and I’ve burned through a number of hobbies in my short life.

I consider very few of my interpersonal relationships truly important – but those that are important, I’m willing to invest a lot of energy into. Often those relationships are important precisely because I know those people will still be there when I am sick, and after.

I suppose that’s the trick: what’s important is what sticks even when you’re sick. I’ve sold things to pay medical bills, I’ve lost friends who couldn’t grasp what I was going through, I’ve seen doors close in my face. What’s important is what’s left after all that. Anything else is transitory, ephemeral, and not worth getting too excited about.

(Photo from Flickr user ariel design)

“Suck” would be the most descriptive. “Pain” is also appropriate. “Poop”—also apt. But the four-letter word that is most problematic, the most central to my disease, the most consequential and challenging of all is this: “food”.

Granted that’s not much of a description, so let me elaborate. I have a “digestive disease”, which means I wouldn’t have any problems if I didn’t have to eat. If my intestines were useless vestigial organs—like knuckle hair—I would be fine. But we haven’t advanced that far: I still have to eat, and what I have to eat is food.

So I have a pretty complicated relationship with food. Most of the time, when I eat the wrong thing I suffer. Sometimes, when I eat anything, I suffer. And sometimes I can’t eat anything at all. I’ve been ‘fed’ through a vein, and I lived for a month on nothing but vanilla Ensure and water. I’ve been anorexic for stretches of time, simply incapable of putting food into my mouth, until I grew weak enough that my survival instinct took over and forced me to eat.

On a day-to-day basis, I’m pretty picky. I can’t eat just to eat; I have to want the specific food I am eating, to be excited about it. It has to be worth taking the risk that it will make me sick, because I never know when I will discover a new food sensitivity. My present list of food sensitivities is long and onerous: uncooked dairy, alcohol, caffeine (including chocolate), soy, hot pepper, mustard, citrus, artificial sweeteners.

It’s not all bad news: apart from that list, I can eat just about anything I want: I don’t have to worry about fatty foods, in particular, because I lost the part of my gut that absorbs fats. I just poop it out—which can sometimes be its own problem, but I still fit into pants I bought in the 1990s.

And then there are the foods I can’t live with out. Ginger: nothing is better for soothing an upset stomach. Chicken and rice soup stops diarrhea like nobody’s business. Herbal tea: just to drink something warm every now and then. Gummi bears: my favorite candy, and oh-so-gentle to my system.

Being more deliberate about my eating has also had some positive consequences. I don’t eat much junk, because I can’t. I learned to cook—I had to—just to make sure I was getting food I liked. And I took up gardening, so that summers at least have an assortment of tasty fruits and veggies—because what supermarkets are selling often tastes like wet paper.

Maybe someday I’ll transcend my need to eat, but until then I’m stuck with food: sometimes I love it, and sometimes it’s a four-letter word.

Before I get to that, I want to clear my tabs in this last post of the year. First, you should read Bob Herbert’s op-ed about the Senate’s plan to fund health care by taxing “Cadillac” insurance plans. I was indifferent to this proposal, but Herbert makes a very good case for why it is wrong, and so I am now against it. We can only hope the mechanism is abandoned in the reconciliation process.

Next, this article from Tony Judt, about what it’s like to live with ALS is striking and moving – and especially resonates when he says, “it is hard to resist the thought that even the best-meaning and most generously thoughtful friend or relative cannot hope to understand the sense of isolation and imprisonment that this disease imposes upon its victims.” I have often thought the same of Crohn’s, and I am sure it’s true of a great many other illnesses.

Lastly, back to Alien: I happened on Dan O’Bannon’s obituary in the NY Times over the holiday. O’Bannon wrote the screenplay for Alien, as well as several other horror and science fiction films. O’Bannon also had Crohn’s disease – in fact, the obit quotes him as saying, “the idead for the the monster in ‘Alien’ originally came from a stomachache I had.” I’ve seen Alien a half-dozen times, and now it makes perfect sense: how I’ve wished the monster gnawing at my guts would just kill me and/or scamper away.

Of course, most doctors will tell you that Crohn’s is incurable but not terminal – so it’s notable that the obit states, “the cause [of death] was Crohn’s disease.” That could mean any number of things, from surgical complications to sepsis to self-assisted euthanasia – there are a lot of ways to die from Crohn’s disease. But the fact that you might identify a proximate cause of death in no way changes the underlying cause of death; so when doctors say Crohn’s isn’t terminal, what they mean is that in theory you could live a normal lifespan, if you can just avoid all the different ways people with Crohn’s disease die prematurely. Props to whomever named Mr. O’Bannon’s cause of death for what it was.

Sad though Mr. O’Bannon’s passing is, I am at least grateful I can finally claim a movie for my disease. People with AIDS have Philadelphia, and people with ALD have Lorenzo’s Oil – but those of us with Crohn’s? We have frickin’ Alien – and that’s a pretty badass movie to have.

That’s it for 2009. See you in the new year.

So anyway: about hardship and spiritual growth. This is a fairly common attitude in the church, and even among non-believers vis personal development. The idea is that you only ever grow when forced to, when conditions require you to. The jocks at the gym will tell you, “That which does not kill you makes you stronger” – but give them the choice between dengue fever and shooting up  juice, and see what happens.

The complement to this idea is that suffering is at some level beneficial, because it forces you to undergo the growth that you otherwise wouldn’t. In religion, this is often expressed as God ‘choosing’  a person to suffer to make them a better person. Elsewhere, it’s just a latent prejudice that suffering builds character, or whatever.

This meme, such as it is, needs to die. And not just die, but die a painful death – a flaming spike through the chest, or drawn and quartered, or maybe even untreated cancer.

Yes, suffering sometimes produces growth, and a number of people have discovered their better selves amid suffering. But not everyone who suffers makes this discovery, and I would say not even most. There is a surfeit of books and movies about people who triumphed over adversity, and learned important life lessons in the process – but you never see books or movies about people who were pricks before adversity and stayed pricks afterward.

For the patient, this creates tremendous pressure to find transcendance in illness. I’ve seen plenty of folks scramble and scurry to make something – anything – of their illness, like disease is a giant box of stale, wormy Cracker Jack with a surprise buried somewhere inside. These days, I think a lot of people are surprised to find out that illness, deep down, really is just pain and suck – and then despair.

But worse are the people who  simply tell themselves they are better just for having gone through suffering – even though they’re still ginormous pricks. The meme is so widespread that people latch on to it just as soon as they’re diagnosed, without ever really undergoing the personal struggle that actually makes you a better person. And God forbid you discover in your experience something that doesn’t mesh with the narrative. (Along those lines, let me recommend again Barbara Ehrenreich’s excellent essay, Welcome to Cancerland.)

I want to think I have grown as a result of my illness. I am certainly more deliberate in how I live my life, and that’s a good thing. But I also have to admit that the times when I have suffered the most are also the times when I have been the most selfish, irresponsible, and unresponsive to the people I love. I am not a better person when suffering, and I doubt I am that much of a better person for having suffered.

Moreover, now that I am relatively well, I have a lot of energy that I can devote to self-improvement. I want to use some of the energy for spiritual development, and I think it’s ridiculous to suggest that I must wait instead for more suffering. In fact, what got me into trouble was suggesting that I might encourage the woman who makes my life so joyful to start beating me, so I can suffer and therefore grow; but if you really believe suffering is beneficial, does it matter what the suffering looks like?

Illness – and suffering more generally – doesn’t make you a better person. You can, in response to suffering, make yourself a better person. But you can also make yourself a better person even without suffering. In fact, in some ways it’s a lot easier – but you might not have a sense of urgent need to do so. Meanwhile, telling ourselves that suffering makes us better people makes it easier for us to ignore suffering in others – and that, as a matter of fact, makes us worse.

The snow was pretty, but I hate it. I grew up in Florida, and didn’t see standing snow until I was eleven years old. That was too soon. Cold is my kryptonite, and winter my hell.

I’ve always been skinny, so I have a hard time being comfortable in cold weather. Real cold is painful to me – like burning. I can take 100* temps with 80% humidity no problem, but if I go outside in weather below 50*, I’d better be wearing long underwear.

Even indoors it gets bad: my PCP says I have a mild form of Raynaud’s syndrome, especially in my feet and right hand. I can hardly drag myself out from beneath the comforter in the morning, and on the mornings I’m brave enough to shower, the hot water feels like acid on my toes. After a quarter-hour of work at my desk, my hand feels dead and frozen; I have to make a cup of tea just to have something warm to grasp.

Today I decided to tackle some end-of-season yard chores, and I spent more time inside trying to waterproof my hands than I did outside working. I finally settled on a glove liners under latex exam gloves under ‘waterproof’ shells – and my hands were still numb when I finished working.

All that would be true even without Crohn’s, but winter also brings a mini-flare of my disease. Sure enough, I’ve been feeling a bit off the last couple of days – nothing worth going to the hospital for, but not the relative stability I enjoyed into fall. So I feel tired and a little queasy, and I will feel that way probably till April.

Part of my current problem – it’s hard to say how much – is from last weekend’s cookie baking party at our friends’ place. After my surgeries, my system can’t deal with large quantities of sweets and fats – basically everything delicious about the holidays. I can fight it, but my sweet tooth is somtimes irresistible… at which point the little monsters in my gut go crazy on excess nutrients. Right now, my poo looks like pond scum and smells like tear gas. To fix this, I’ll have to be scrupulous about my diet for the next several days – which, of course, includes more parties.

I know lots of people consider this their favorite time of year. And me? I’m sick. Winter is hard on a body. Thanksgiving to New Year’s Day is more or less the toughest time of the year for me: lots of stress, lots of dangerous food, lots of social activity with potential for discomfort and embarrassment. Honestly, I would gladly forego the food and presents and parties if it meant I could skip from mid-November to early April every year – go to Mexico or Australia, or maybe just hibernate in bed. Consider that for a moment: I would give up Christmas to make my health just a bit better.

Since I can’t escape the season, I do at least try to enjoy it – even knowing things will get rough for me. My one consolation is that I allow myself to grouse endlessly about how much I despise this weather. I do hate it so.

(Photo from Flickr user jessicajuriga by CC license)

Did you have a good Thanksgiving?

I had a good Thanksgiving. In fact, I had a really good Thanksgiving – maybe my best ever. Saturday afternoon, we were walking around town, doing a little shopping, and I felt so happy. I was giddy – like I was high.

It might have been the weather, and it might have been the family. It might have been the delicious meal prepared by my lovely and talented Executive Nutritionist. It might have been the hiking and the music and getting a good night’s sleep and the happy little puppies wagging their tails at me.

But I have to admit: it might have been the drugs. Specifically, paroxetine: I now take triple the dose I did when I started last summer. I originally took it because I was having trouble concentrating – a sign of depression, though I didn’t feel particularly sad. The drug has helped some with my concentration, but I’ve also noticed that I’m happier, less easily ticked off, and I have more energy. The drug has to play some role in all of this.

So back to Thanksgiving: I might dismiss my happiness as a medicinal mirage. Maybe I really had a crappy Thanksgiving, after all. This is why I resisted taking brain meds for so long: I worried it would make me fake happy, and not really happy.

My past experiences with meds played into this concern. Prednisone, among its many side effects, made me fall in love – hard – with just about any girl I happened to know. Over the course of one prednisone-infused year of college, I fell in love with a dozen girls, one after the other. None of them were the least bit in love with me, of course, and some of them were plainly wrong for me. And that experience – because it felt so real, but was so obviously a product of the chemical – made me deeply skeptical of being in love. If prednisone can do that, how can being in love mean anything?

And, in all candor, almost a decade of anti-drug instruction in school didn’t help. We children were told again and again: what you get from a pill or a needle can never be real – so get high on life! No wonder I balked at pills to make me happy: my internal Nancy Reagan was always there to tell me it was wrong. My anti-drug, it turns out, is depression.

What I have come to accept is that my emotions are no less real or valid for having a clear mechanism. If I have reasons to be happy, my happiness is not fake – even if it comes from a pill. This weekend, everybody around me – medicated or not – agreed that we had a wonderful Thanksgiving; whether or not paroxetine was making me happy, I was happy for good reason.

Same for falling in love: I have every reason to be in love with my wife – and I am, very much, but I don’t have to worry whether it’s paroxetine making me feel this way. The problem with prednisone was that I didn’t have good reason to fall in love with those women – not that falling in love is only legitimate when inexplicable.

And I think that accepting the validity of the explicable is a big step for me. Whether my feelings come from the disease, the pharmacy, or God, I have to deal with them and act on them just the same. The question, “where do my feelings come from?” isn’t nearly as important as, “what am I going to do with them?”

So yes, I really did have a great Thanksgiving. Drugs or not, I hope yours was just as good.

(Photo by Flickr user mortimer by CC License)

Saturday morning I dragged myself out of bed a bit earlier than usual, so I could walk to the community center where the country was running its H1N1 vaccination clinic. I got there 30 minutes before the clinic started, and there were already 500 people in line. I stood in the rain and cold for a few minutes, and decided the pork pox can just have me. I can deal with a fever; I can’t deal with cold and wet. Most of the people in line were little kids, too, so they probably need it more than I do anyway.

Today, I at least got a seasonal flu shot, even though seasonal flu is probably what I had a few weeks ago. The process was relatively smooth, though the forms did have these questions (among others):

Have you been sick in the last two weeks? [] yes [] no

Are you taking any medications? [] yes [] no  Please list:_____

The correct answer to the first question is, of course, “[x] yes” – in fact, I’ve been more or less sick my entire adult life. But I marked “no”, because I know from experience that they don’t care about Crohn’s disease, and I didn’t want to have to explain my answer.

As for the meds, there was literally an inch of blank space fit the names of all my meds. I decided to list only the three big ones, one of which is OTC and probably could have been left off. But a few years ago this would have been a serious problem; given the dozen or so meds I was on, I probably would have needed an extra sheet of paper. Actually, I probably would have brought a print-out with me.

When it was my turn to ride the needle, I handed my form to the nurse. She asked me the same questions again, except for the meds question. This may be back-seat driving, but it seems to me that if somebody hands you a form that names three medicines, you might conclude that said person is in fact sick. But when she asked me the “sick” question, I said “no”, and she bought it. She probably recognized the meds and decided they weren’t relevant to her mandate.

I realize the question really means, “have you had flu-like symptoms in the last two weeks?” Still, it’s not at all clear why they can’t ask that directly, instead of being so vague. Nor is it clear why the form’s author was unable of pressing the underscore key more than five times – or even just holding it down for a while. Like this: __________________________________________

It’s that easy, folks.

(Photo from Flickr user nchoz by CC license)