You’ll recall that the question asked where you would be without your illness. I had ample time to think about this over the past week; we took a vacation out West, and drove through Colorado Springs. You can see, from Interstate 25, the distinctive spires of the Air Force Academy chapel – as a kid, all I wanted in life was to go to the Academy and join the Air Force. That’s probably who I’d be, if I hadn’t gotten sick.

That’s my shallow answer to a deep and difficult question. After reading others’ answers, I see that I made an assumption that illness is a formative event in everyone’s life. Not so, as I  learned. Getting sick was probably a bigger change for me than for many people, because it came at such a dynamic point in my life (ie senior year of high school). But for an adult, already set and formed in their identity, this ends up being a trivial question. So when Vlad at WellBook Blog writes, “I have not allowed my illness to change the deep fundamentals of my personality” – that’s a claim I can’t make for myself, and it makes me wonder when he became ill.

From the other direction, Laurie at A Chronic Dose writes, “When you’ve been sick your entire life, that becomes a much harder question to answer.” When all you’ve known is illness, it’s probably quite difficult to imagine a life without illness, at least one that makes sense.

Several contributors argued they would be worse persons, at least in some respects, without their illnesses. Diana at Somebody Heal Me says she is a more humble, cooperative person for her illness, but – “I don’t think this awareness is a fair trade off for losing my career, my connections to other people and the ability to earn my own living, not to mention the pain I live with daily, but I do think it is important to acknowledge the ways in which something positive has come out of an otherwise completely shitty situation.” Leslie at Getting Closer to Myself doesn’t exactly answer the question, but comes up with similar thoughts – “Sometimes I feel like illness has made me a stronger person than I was when I was healthy. But right now that seems like a pretty big price to pay from always having to be on guard about my health.”

Finally, two of the most positive contributions: first, Rachel at Rachel’s Diabetes Tales says she would be lost without her illness – “I can’t put my finger on any other interests that would have sparked my writing bug and allowed me to find purpose in my life.” And Sandra at Healing Environmental Illness writes – “Illness has pushed me to come to know my true self instead of living life on automatic, half asleep, racing endlessly toward that elusive concept of who I might have been.” If we can’t all be well, we can at least hope for this sort of purpose and self-awareness.

Not too many answers this week, but thanks to everyone who contributed. I don’t have a host for the next edition (March 24th), so let me know if you are interested.

Who would you be without your illness?

There’s a lot of emphasis in our community about staying positive, looking towards the future, optimism, et cetera – all of which has merit. But too much deliberate cheeriness denies us the ability to think and talk about what we’ve lost to our illnesses. We lose our ability to grieve for the person we wished to be, which seems to me an important part of adjusting to our circumstances. So the topic this time is that person, and how they would better, worse, or simply different than the person you are now?

Send submissions to dx@duncancross.net with :

1. Your name
2. Your blog name
3. Your post title
4. Your post’s URL

Deadline is midnight Sunday, March 7th, and the edition will go up on March 10th.

And I’m still looking for future hosts. Let me know if you are interested.

Travis is based on a real person, named Chuck, who was one of my best friends. I say “was” because his illness eventually claimed him, back in 1997 or so. When I first got sick, my parents thought it would be a good idea for me to hang out with Chuck, as he was also sick and dealing with some of the same issues. I thought it was a stupid idea, but I literally had nothing better to do. Besides, Chuck was in to fishing, as was I. Contra my extraordinarily low expectations, Chuck and I got along and became good friends. We discovered that we both greatly disliked the patronizing attitudes the “adults” expressed about our illness, and our friendship was more subversive in nature than my parents had intended. I don’t know how I would have gotten past those first years without knowing Chuck, but I strongly suspect I would have been far weaker and less successful in coping with my illness. Part of the reason I am writing and sharing this work is to pass along the sensibility that Chuck helped me form, and which I credit for a large part of my resilience and strength against my disease.

My relationship to my illness has been almost entirely bad, like Ike and Tina bad – and I’m not Ike. I’ve always wished illness wasn’t in the picture.

Yes, there have been times when it’s easy to forget my illness – like when I’m asleep, or unconscious, or otherwise not awake. I sometimes escape my illness for a few hours, get far enough away mentally that I don’t worry about it, but I’m always vaguely aware that disease is somewhere inside me. I might feel fine, but I still know where the nearest bathroom is and how I can get there before anyone notices I’m gone.

There are a few times – a precious few times – that illness has actually worked to my benefit. These times would fall under the general category of “pity dates”, and I’m not proud of that at all. I’d gladly trade those rare times for a life without illness. And then, of course, there’s the question of who I would have been dating if I weren’t sick. Those pity dates were good, but not that good.

One of the constant themes in the popular understanding of illness or disability is that suffering is somehow good for us sick people. We learn something or become something we wouldn’t otherwise be – and that whatever is better than who we were. I don’t think that’s necessarily, or even often, true. The people pushing these platitudes aren’t slamming mag-citrate, trying to induce crippling diarrhea, in the name of their own self-improvement. My disease isn’t like cancer or RA; the symptoms are easy to reproduce with over-the-counter medicines (or even bath salts). Obviously, whatever reward I’m getting wouldn’t be worth it to them. So why am I supposed to be content to know that my difficulties “build character”?

That said, there is a legitimate question as to who I would be without my illness. I like to think I’m a good person, and maybe I wouldn’t be as good a person now if I weren’t sick. Looking back at the threads of my life, I see many that don’t lead to this point. And it’s hard to know whether the person I am now would want to trade places with the person I could have been. I honestly don’t know.

An interesting thought experiment, but nothing more. The fact is I am who I am, mostly despite my illness – not because of it. And if I have learned anything from my illness, I consider it my duty to humankind to teach those lessons to other people, so they nobody will ever have to suffer to learn them again.

Yes, people will suffer – that much is inevitable. But when someone tells them, “your disease will teach you X“, they can reply: “I already know X. I read it on Duncan Cross’s blog. Now piss off.”

I have published the first five chapters in this new format, so you don’t have navigate them like you do blog posts, but more like you might a book. It’s a lot easier for me, too, to publish them—which was part of the reason I ran out of steam in my first attempt last summer.

Start here for disclaimer and licensing information: League of Mortals . As you click through the chapters, the next chapter becomes available in the right-hand bar (clever, no?). I will try to post another five chapters a week, since it’s easy for me to work in batches.

Let me know if you have any problems with the format; the actual content I will just go ahead and apologize for again, and remind you once again it is Not Safe For Work.

If you’re interested in hosting, let me know.

“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.

[Senator-elect Scott] Brown has not disavowed his support for the state’s law, which retains majority backing in Massachusetts.

Instead, he argued on the campaign trail that Massachusetts had taken care of its own uninsured, and it would not be in the state’s interest to contribute to an effort to cover the uninsured nationwide.

“We have insurance here in Massachusetts,” he said in a campaign debate. “I’m not going to be subsidizing for the next three, five years, pick a number, subsidizing what other states have failed to do.”

He’s not opposed to health reform, you see – he’s just opposed to everyone outside of Massachusetts getting it. Kevin has a good post on what this means for reform, even if I don’t agree 100% with his viewpoint (though he gets points off for keeping incoherent company). For one, I am less than optimistic that whatever reform does happen will be more “progressive”; on the other hand, if it doesn’t get passed I have a reason to keep this blog alive. I had hoped to shut down once health reform was resolved to my satisfaction, but I am beginning to fear the process might yet outlive me.

On a broader note: those folks cheering Brown’s victory need to realize this is not a triumph of democracy. In a truly democratic system, the party affiliation of the 41st most conservative member of the Senate would not matter one tiny whit. But in the system we have, the Senators representing as little as 11% of the population can filibuster policy that benefits the other 89%. You may or may not think that’s a good thing, but it’s definitely not a democratic thing.

At least Scott Brown is pretty clear: he isn’t joining the Senate to do anything good for the American people. His state has health reform, and the devil can have the rest of us.

(via Matt Yglesias)

You’ll notice a bit of a change, if you haven’t already – I’ve surrendered to the inevitability of themes. In fact, I’ve gone one better: each host will ask a question, and solicit answers to it from other bloggers. My hope is that this will get us talking to each other even more than we already are.