The Albatross

Friday, July 24 2009

(Photo from Flickr user angrysunbird via a CC license)

This post is about s-e-x, so those of you who are squeamish should find something else to do for a while. Seriously, the chance of TMI is nearly 100%. If you do read it, don’t complain after that I did you wrong.

So anyway, for last week’s Patients for a Moment, Leslie from Getting Closer to Myself submitted an excellent post on intimacy and illness. Leslie’s post responds to her reading of Kairol’s book, Everything Changes, and reflects on their similar experiences as young adults with illness. Read the whole thing.

My experience is a little different, since I was still a kid when I got sick. I was almost 17 years old, and still very much a virgin. We’re not talking ‘technically’: I was a virgin. This was mostly because my church taught a strict view of such things, and premarital sex was a definite no-no – not so much a ‘burn in hell’ no-no, but a ‘make the baby Jesus cry’ no-no. I realize that’s not much of a distinction for the non-Christians in the world, so trust me that it makes a difference.

Having these religious beliefs meant I never really had to come to terms with my body image and the physical consequences of my illness. In retrospect, Crohn’s destroyed my body image more than it did my actual body – but I never dealt with that, because I was so far removed from anything ‘bodily’. Nobody but doctors ever saw me undressed (which was part of the problem). I didn’t even take my shirt off at the beach.

I had a close call at 19; a girlfriend and I got really serious, and talked about ‘the next step’. It terrified me. I dumped her quite coldly, and defended myself by saying that I needed to get back to my ‘religion’. The church I went to in college was also against premarital sex, so I felt justified. I threw myself into church activities – small groups, mission trips, et cetera. None of which I regret, except that it let me think I was a good person, without ever recognizing what a jerk I had been.

And through that church, I later became friends – just friends – with a woman who had struggled with depression. She and I got to be close because we had a lot in common. Back then, it was surprising how similar all diseases can be. Her depression was crippling and isolating – she is the most alone person I have ever met. She is gorgeous and smart and funny, but everyone she dates eventually gives up on her because of her illness. Yet she finds great solace in intimate, physical relationships. She needs touch and contact – it’s medicine for her.

And our church told her, ‘that’s a sin’ – as if God wanted her to be crushed by despair forever. As I got to know her, I just couldn’t bring myself to blame her for any of it. She was a good person; she put a lot of energy into her faith and work and life, and was still afflicted by a terrible disease. And I couldn’t imagine God being too upset with her, either. (Meanwhile, I was beginning to think the baby Jesus must have cried himself to sleep by then, for all the young people in that church who were totally doing it.)

I began to realize that maybe pre-marital sex wasn’t always a bad thing, and that I hadn’t believed that for a long time. My resistance to intimacy wasn’t based on what I believed; it was based on what I feared. As much as my friend needed intimacy, I was scared of it. Any sort of intimate situation would send me into a panic, my brain screaming ‘get out get out get out’. (I shudder to think what my former girlfriends remember of these episodes.)

I was terrified that someone would see me naked and discover me for the sick, disgusting freak that I was – and then reject me completely. Bear in mind, this was all in my head. Physically, I was just a very skinny, awkward guy; there was nothing obviously wrong with me, except for one nearly invisible scar from a surgical procedure. Mentally, however, I was afraid. And discovering this about myself – that I was calling fear ‘faith’ – was a big turning point for me.

So by the time I was in my early twenties, I realized: I don’t believe premarital sex is such a bad thing. In fact, I had come to believe that it could be quite a good thing. My general conclusion is that anything done in genuine love is not bad, per se – and by then I had loved enough to know true from false. Let me say, I think it’s still justifiable for a person to believe that premarital sex is wrong. That can even be a healthy decision. But what I was doing – substituting fear for a real decision – was not healthy. And once the fear was gone, the decision could bear no weight.

All this happened relatively quickly, so that I arrived in my mid-twenties still a virgin, but convinced that I was ready to be anything but. I began to take dating a little more seriously, to put effort into potentially intimate relationships, in hopes that they might lead somewhere after all. And I discovered that the sorts of women who are amenable to pre-marital sex are not at all impressed by a 25-year-old virgin. In fact, quite the opposite; my virginity had become an albatross. I can’t say it any better than Coleridge:

Ah – well, a day! What evil looks
had I from old and young.
Instead of the cross
the albatross
around my neck was hung.

I had so feared the stigma of my disease, that now my fear was itself the stigma. Women are wondrous creatures, and somehow they just knew. They saw it on me like wet paint; they wouldn’t go near me. It was an intensely frustrating period in my life.

Alone, alone, all, all alone,
Alone on a wide wide sea !
And never a saint took pity on
My soul in agony.

The story of how that changed is, I think, in fact too much information, but it involved a woman just as sick and broken as I was. There was a lot of healing in that relationship, even if it only lasted a few months. Those few months were transformative, in many, many ways.

While my beliefs have grown less strict over the years, my faith has only strengthened. Lately, a cornerstone of my understanding of sexuality has been Rowan Williams’s essay, “The Body’s Grace”. The essay is long, complicated, very Christian, but entirely worthwhile. One of the questions he asks of sexuality is, “How much do we want it to display a breadth of human possibility and a sense of the body’s capacity to heal and enlarge the life of others?” And our answers to this question, he says, “are decisions about what we want our bodily life to say, how our bodies are to be brought into the whole project of ‘making human sense’ for ourselves and each other”; “Decisions about sexual lifestyle are about how much we want our bodily selves to mean, rather than what emotional needs we’re meeting or laws we’re satisfying.”

What do we “want our bodily selves to mean”? Being sick forces you into a peculiar relationship with your body. I want to say ‘love-hate’, but for me it’s been mostly hate; I have hated my own body with a ferocity most people reserve for cheating spouses, pedophiles, or cilantro. But this relationship also requires me to live more deliberately, more thoughtfully, than most ordinary people. I cannot take my bodily meaning as given – it is too miserable a way to live. I must always ask and examine what my bodily self means, and what I want it to mean. And my view is that sexuality plays rather an important role in ‘making human sense’ of my life; if I err, I want my bodily life to mean too much, rather than too little. This is a decision that has taken me more than a decade to make. I suspect Kairol and Leslie were going through a similar process – trying to resolve the same tensions in their own lives. I also suspect some people will never make this decision for themselves, which is unfortunate.

I am not saying illness is good, nor telling anyone how they should live with (or without) illness. But as sick people we must often live more deliberately and thoughtfully than we might otherwise. And in so doing, we learn and invent new ways to live. Because we find our lives stripped of their ordinary meanings, we must continually discover and define new meanings for those lives. So we can view our illness not as an excuse for ‘wrong’ behavior, but as a challenge and charge for new behavior.  In many instances we will find – as I did with sexuality, but not only that – that the rules governing our behavior are simply too limited to be meaningful to the realities of life. And I think, moreover, the territory of such instances is vast and largely unexplored. The spoils of this exploration, which our circumstances have forced us to undertake, is what we might offer the rest of society: new ideas, new meanings, a new understanding of life. And when we arrive at the new, we should – like Leslie and Kairol – have the courage to tell our stories.

I freely admit my albatross wasn’t a big deal in the grand scheme of things. But within my specific context, I think what it says about my life is important. Which is, I suppose, why I feel compelled to share all of this with an Internet full of strangers.

Since then, at an uncertain hour,
That agony returns :
And till my ghastly tale is told,
This heart within me burns.

Tags: biog, ills

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